Rehab Story Continues: Mistakes Happen

Pss. 112:4 “Unto the upright there ariseth light in the darkness: he is gracious, and full of compassion, and righteous.”

Rehab Story Continues: Accidents Happen

As I said in the last post, my chemo meds never arrived after my hubby waited all day for them. After visiting me on Friday, he went home and placed a call to the online pharmacy where we get the chemo meds from. Turns out, the order was NEVER PLACED by my doctor’s office. So he went ahead and placed the order, they would now not arrive until the following Wednesday. Go ahead, you’re allowed to let your jaw drop. If me taking this Oral Chemo is so important, what on earth happened with the ordering? I don’t even think my doctor's office gave us an explanation. Hey, accidents happen, right?

Anyway, here we are on Saturday. My son would come before three if he had a 3-11pm. shift,  six o'clock after Steven left if he had an 11-7am. shift. Now with my son in his new apartment, he was closer to the hospital by about twenty minutes. His place was safely tucked right up the road from the Home, and a good thing because when hubby locked his keys in the car, my son still had a spare key from when he drove my car, to be able to just run the key up to the Home.

I thought Saturday would be a rest day in the Home, but no, the Phys. Therapist arrived about eight o'clock (before breakfast) to assist me in my fifteen minutes of physical therapy. Yes, you read that right, fifteen minutes of PT. I took it upon myself both at the Hospital and the Home to do PT throughout my day on my own. I was determined to make it to that commode without assistance! Back home, when my brother injured his hip his PT therapy sessions were well over an hour, he told my mother. Not for me, I get fifteen minutes. 

My son came and went for a visit by three, and hubby arrived for his visit after he got off of work. He works right up the road too, so no sense in going home, out of the way, when we had such short visiting time. I told him how my meds were never on time and asked if he could bring me some from home. Pain is pain as everyone knows and we NEED something to relieve the gnawing grip. If the Home wouldn’t supply, then my meds from my home would!

This would be my first weekend here and already I’ve seen differences. Well, the obvious is that the Administration nurses were off for the weekend and the young aides were left to fend for themselves. This home had a North and South wing, around thirty residents to each wing, two aides to each wing. It was under construction so the rooms were doubled up with patients, meaning four to use one bathroom, if they were able. They still needed a nurse to assist no matter what.

The cries in the hallway were deafening, the lady across from us kept yelling, “Can someone help me to the bathroom?” What seemed like forever the woman kept being told, “In a minute.” Then there were the televisions blaring, the visitors who thought it would be a good idea to bring their six-year-old to a nursing home, not knowing if it would traumatize them for life! Then the elderly men playing some kind of video games where beeps and whirs echoed.

Ray was in her wheelchair when she called for the nurse to get her into bed. It was about seven o'clock. The aide came in and told her, “Ray I’ll be with you in a minute, we have a situation out here. We’ll get to you as soon as we can.”  I saw no use in telling them that I needed to pee because I know I’d get the same thing. We’d sit and wait. We talked. I tried keeping the conversation light but Ray unleashed some bitter traumatic stuff from her past. I listened. Then she grew angry as her pain was heightening from being in the chair for too long. She pushed the button again, eight o’clock and ticking, the aide popped in with the same words but added, “Please be patient, there is only TWO of us on duty for North AND South, and lights are lit all over the place. Bert fell out of his chair and we have urine all running down the hall, it’s a mess out here, literally.” You could hear the pill cart being wheeled down the hall amid all of the commotion going on. She closed the door and left.

Nine o’clock came and here we were both still needing a tending to, Ray still in her wheelchair, in pain and I in my bed helpless against helping. Ray was now crying, and I too was silently allowing tears to stream down my cheeks. “Ray,” I cried out, “I am not going to sleep until they take care of you.” She sniffled and said, “You don’t haft ta do that. You’re tired too.”

“It’s okay Ray. I’m okay. I want you to be okay!” It was the best I could offer seeing I’m as bedridden as her, except she was left in her chair.

“I’m thore,” she cried. Her lisp could sound so endearing at times. It broke my heart. “We’re frendth aren’t we?” 

“Yes, Ray, we’re friends.”

A smell started permeating the room and I said nothing but knew, Ray had gone to the bathroom in her diaper. I could hear her mumbling under her breath how she had *expletive* herself and wanted to be transferred to another facility and how she paid to be in this place and they are PAID to take care of her.

She hit the call button again, it now being nine-thirty. “We’re almost there Ray,” a head popped in to say, “just a couple more minutes.” and the door closed. Ray was now sobbing loud and I tried so hard to comfort her but I myself needed comfort at this time.

This was hell. This is what the hellfires felt like surrounding you and you clawing to get out into some fresh air but you’re smothering, suffocating from lack of oxygen. You could feel your limbs going numb, sweat now pouring from your forehead. The screams now constant whispers as the echoes were in your head, tapping you on the shoulder mocking you and laughing saying, ‘I’m still here.’ 

The door swung open and a loud sigh came from Laura, the oxygen was leaking in, slowly, it was now ten-fifteen. “We’re so sorry,” I allowed her words of explanation to drift off as they finally tended to Ray. She needed two nurses too since she had to be placed in bed with a lift. She had sat in her feces almost two hours and she was extremely sore by this time.

One nurse came to the other side of the curtain to tend to me and I sat with my gait belt in place ready to be lifted. Only one nurse was tending to me, I said nothing when she appeared with no gloves or gown and she proceeded to lift me. I twinged in pain, “Easy please, my hip, it’s still sore from my recent surgery.” With some assistance from me, she lifted me to standing, I tightly grabbed my walker, as she let go of the belt. I said, “Oh no, please, you have to hold the belt until I’m seated, this is how my femur was broken in the first place.”  

I whispered as tears were now rimming my eyes, “Please, please be gentle with me.” She took hold of the belt and as I was almost seated, she let go. I almost plopped onto the seat but my strength and my prayer placed me gently on the commode. She just stood there, waiting for me to pee. A watched clock never runs, but my floodgates opened from holding it in for hours!  

I had my own Kleenex because they offered me nothing. I was ready to be placed back in bed. Again, amazon woman lifted frail 88-pounder me by the gait-belt, I pivoted and sat on the edge of the bed, I told her I could make it from here, I was good, go finish up with Ray.

Ray kept telling them that I ‘Thtayed awake for her’  and that I wath her real fren. I smiled my tears away and lifted my legs onto the bed. The nurses bid us a good night and wouldn’t you know it, the meds from the charge nurse finally arrived. With meds down the hatch, we both let out a sigh of relief.

“We made it, Ray.”

“We did, didn’t we! You thtayed awake for me. Thank you!”

“Not a problem Ray, we’re friends.”

"That’th right, we are. Okay, goodnight.” She was out like a light before I even got settled into bed.

I had been texting my husband the entire time we waited for the nurses/aides/whatever. He was calling left and right to the front office, he as helpless as I was. “Goodnight, Ray,” I whispered as I shut off my little nightlight.

Matt. 14:14 “And Jesus went forth, and saw a great multitude, and was moved with compassion toward them, and he healed their sick.”

Rehab, the Story Continues: Santa is There

John 8:12 “Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life.”

Three-and-a-half days! I made it. I made it to the weekend. But getting there was not without its many hurdles. This story is not all about ‘The Nursing Home’ ordeal, or the staff, this is about my journey, a fifty-two-year-old woman with stage four breast cancer, lymphedema of the left arm, radiation treatment to my bones and recovery of major surgery of my broken femur. Take for instance my Oral Chemo, it was running out, I did not have the wits about me to know how to reorder so I had to leave it up to my husband to take care of matters. The drugs I was on were pretty strong and keeping my mind busy and pretty much in a fog.

He called the Dr.s office, the nurse said she’d order it, no problem, he called back and Fay said it would be delivered Friday but needs a signature. Uh oh, hubby would have to miss work AGAIN, and miss seeing me all day to wait for meds! Not a happy gal but it’s okay, I’m tough and getting tougher by the day! Needless to say by three o’clock when the meds had not arrived hubby came to the hospital to visit me, even if it was only for two hours. He can’t drive at night, so we watched the sun (or lack thereof) very closely! A different story, the meds never arrived.

When Friday came I was happy to have made it to this day alive, although I had never wanted to give up more than I did this week. A loneliness had settled in, hubby knew it, and no amount of cuteness from Ray, or compassion from the staff could move me. It was a tough week on my spirit and soul. This was also the last day of radiation to my arm, and my son stepped up and said he could go to the CC with me. The weekend, I’d get a break, right? 

Then there was the day earlier in the week that they had to take my clothes to put name tags on them, even though we told them WE would wash them, they needed to be tagged. (I didn’t hand everything over but I stupidly gave them lounge pants, two flannels, brand new socks, and a pair of underwear. All were returned by Friday except my underwear and socks. When Kay, my occupational therapist heard this she set out on a search of my missing panties. She returned to my room waving them in her hand and said, “Hey, no wonder they wanted to keep them, they’re cute!” We both laughed but I through my tears. She hugged me!

Then there was Santa. Thursday had been a day of sunshine and warmth and I had even had a chance to open the window. Ray didn’t like the window opened because it gave her a chill. She was on the other side of the curtain between our beds and didn’t know it was open. The warmth, the sun, it was all I had to cling to. Yes, people, before you tell me to cling to God, please know, HE is the only thing that kept my breath in my lungs, He is first and foremost, but the sunshine and the warmth were for me on this day. 

Coming back from my radiation treatment that day found me in the sunshine. On the side of the entry to the hospital was a little area with a table and four chairs, lining a brick path were rocks, rocks of all shapes and sizes. Hubby and I followed the path, to the chairs and table and we sat in the sun, I in my wheelchair of course. We watched as nurses changed shift and a nurse had brought a resident outside to feel the warmth of the day. The table was back a little ways from the entry so hubby and I enjoyed the table and sunshine. I enjoyed the one monarch butterfly that landed on a rock not ten feet from me and my chair. Thank you, Jesus, I whispered out loud, as a tear trickled from my eye. 

Then he appeared, an older man hunched over his walker. He was taking tiny steps as he scooted to the path. An obvious Husker fan dressed from head to toe in his puffy red Husker slippers, his red husker lounge pants filled with the Husker team logo, all topped off with his white t-shirt with a big N for Nebraska, trimmed in red on sleeves and neck. His full white moustache and beard were reminiscent of Santa Claus. Steven softly sang… ‘here comes Santa Claus, here comes Santa Claus, right down Santa Claus lane...’. I smiled.

Santa stopped at the rocks and just stood there looking down at them. One minute, five minutes passed and he moved, inching closer to where Steven and I were sitting. Again, Santa paused to stare at the rocks. He was within earshot of me now, I said, “Do you like the rocks as much as I do?” I myself was eyeing one shaped like a heart. Yeah, I draw to me these kinds of people. 

He looked up at me, then back to the rocks before he answered, “Yeah.” He began inching closer to me again, and stopped, mesmerized by the rocks. He began talking without looking up from the rocks, “They’re beautiful. Back in my shop, I take CLR to clean them. It brings out their beauty, then I polyurethane them. Yup.” He began to turn around and looked at the other side of the path lined with rocks.

As he slowly turned, he made his way right to the edge of the path. I thought he was turning to go back in the home but no, he paused to look at this side of the path, too, before heading inside. Staring at the rocks he whispered, 

“Y’know, it’s like looking at a million mountains,”  he went on, “Y’know how the rocks are made don’t ya? The rain,” he paused a moment, “the rain cuts them out of the mountains and they all wash downstream, getting cleaned up through the river until we gather them and see them for their beauty.”

By this time I had tears in my eyes and Steven and I were both looking at each other in wonderment. I knew there was a message in there for me but I couldn’t see it through my tears. Santa looked at me and smiled raised a finger to tap his nose and he proceeded to slowly walk back to the door, with one last quick pause to gaze at the rocks, he went inside.

I told Steven that it was now time for me to go back inside too, I got what I came for, a message. I picked up a rock, and we went inside the home, to my room. It didn’t seem so small anymore.

The moral of the story to me is: We are all refined by God made perfect in His image as we go through the trials and suffering of being washed downstream until we’re seen in our perfection before the Lord.

Isa. 48:10 “Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction.”

Nursing Home Saga Continues

2 Samuel 7:22 (NIV) "How great you are, O Sovereign LORD! There is no one like you, and there is no God but you."

The Saga Continues

The first night at the Home didn’t go too bad but morning came and I was aroused by the lights on Ray’s side being swung into motion. Ray had to be up and dressed because she went for dialysis three days a week. It took a lot out of her physically. She’d be gone until noon at which time she’d arrive back at the Home to eat lunch. Some of the time she would eat in the room because apparently, her trip took too much out of her to be social. She was placed in her recliner and left to eat.

By five in the morning I was awake and most of the time I asked if I could be helped onto the commode. “Sure Joni, just give us a minute.” I was trying to memorize the voices that would be helping me, this day it was Laura. The minute usually took more than twenty to come back for me. I was hungry and wouldn’t eat until nine. A small cup of water sat on my table and I’d take small sips. If I asked for them to refill the cup I brought from the hospital, it would take every bit of thirty-five minutes for it to be returned like it did the day before on my arrival. I was hesitant. And no, I was not on any restrictions of food and water.

I wanted to turn my television on a couple of times but wouldn’t you know it, the previous aid sat the ‘gait belt’ on the stand right in front of the television beam needed for the remote to connect and it would not turn on. I would just sit there, looking around, alone in my thoughts. The curtains were still drawn in the mornings and I awaited the sunrise. My meds would arrive about eight o’clock to eight-thirty and I asked the nurse that day, Bird lady, if she could kindly help me to the commode, the other nurse at six o’clock had not returned. “Well let me get you your meds first.” This nurse was one of the sweet attentive nurses and also in charge of the other nurses, the Charge Nurse. With gloves on, she handed me all of my pills in one cup. My chemo pills were supposed to be taken at different times, like before I ate (which one of them was on time) but the other was supposed to be thirty-minutes AFTER I ate. I was still hungry, no food tray in sight, except the empty one from dinner the night before, and still waiting to urinate. She offered me three packs of crackers to hold me off and often offered me an Ensure drink. 

I wasn’t getting a good feel of the place even after one full day in the confines of the home. At around 9:45 I was scheduled for my radiation; that meant I had to get dressed. The physical therapists came in before eight (way before breakfast) to see what I could physically do. The one PT was very robotic. I would try to make her laugh and she would just deadpan stare at me as if to say, ‘really? I’m trying to work here!’ While the occupational therapist, Kay, was perky and friendly and loved to laugh with me. Our laughter I know could be heard echoing down the hall. When I cried, she listened, she’d hand me the box of kleenex, and it was very comforting having someone in my room to communicate with.

I couldn’t do much like get dressed, heck I hadn’t showered in twelve days and have only been sponge bathed a couple of times at the hospital. My hair was a mangled mess, and what make-up was still left on my eyes ran down my face and I was hesitant to even look in the mirror. I would go to the radiation treatment in my t-shirt and flannel, nothing else but a blanket to cover me because the days were starting to get chilly.

I could only pivot so far on my right foot with the aid of the gait belt so I didn’t fall. The cold radiation slab wanted to break my back but the nurses were very accommodating and brought pillows, a cushion with a sheet, and warmed sheets to cover me. They didn’t treat me like a toxic zombie. They treated me like a patient. They were impressed with my progress since the first round of radiation, where I was brought in on a gurney. They said I was nothing short of a miracle when I appeared in the wheelchair, stood and pivoted. They had seen the x-rays of my break and were surprised I was at the pivoting stage already. My determination to go home kept me pushing forward but never overdoing the exercises I needed to set me free.

After the session was over my husband and I usually rolled down and sat at the window with the beautiful fountain surrounded by a lush garden and benches. There were pumpkins decorating the garden for either fall or Halloween. I lost track of time. We would then wait for the bus driver to return to take us back to the home.

The weather was damp, dreary and chilly most days, at the hospital, I was wheeled by gurney to the CC. At the Home, the community Ryde (bus) bus driver would come to my room and pick me up, unless a nurse rolled me to the sitting room. I was then taken to the Cancer Center. The driver would then come back and pick me up to take me back to the home. Any time I was not alone was a cherished moment for me. Anxiety had built for the Nursing Home very quickly. I would kid with the bus driver and ask him if he wanted to break me out of this place. He’d laugh as we slowly approached the Home. He would take me back to my room if my husband wasn’t there, otherwise hubby would wheel me back to the cubbyhole of a corner in room twelve. Let me state now, the other rooms were EVENLY divided between tenants. With doors open, I could clearly see in each room I passed as envy filled my empty gut.

As I said, to lighten my time in the places I deemed a hellhole, only because it wasn’t home, I used laughter to muddle through. One time being transported on a gurney to the CC I was wheeled to the first floor, past a gift shop, past a Subway (what torture!) and then past a waiting room then out the door into the swift breeze and the only-for-me sunshine. The CC was right next door to the hospital, too close for ambulatory service. I told the guys wheeling me, as I was covered in a white sheet, looking like a dead body being transported, that I would put the sheet over my head, then when I get to the waiting room, I’d jump up, screaming. The one technician laughed so hard he almost stumbled, the other one just shook his head. These guys, as well as anyone who came in contact with me, were getting to know me and my infectious sense of humor. Laughter and optimism kept me ALIVE!

The days were passing by as slow as extra thick maple syrup could be poured from a bottle. Granted the days were full from five a.m until we turned our lights out at 8:30 as we slept until something in the night called us to awaken.

Pss. 130:5  “I wait for the LORD, my soul doth wait, and in his word do I hope.”

My Story Continues: The Nursing Home

Pss. 136:1 "O give thanks unto the Lord; for he is good: for his mercy endureth for ever."

The day came where it was time for me to be transported to the Nursing Home/Rehab center, I cried for more than one reason, I was losing all the familiarity I had for ten days, the closeness of the nurses and physical therapists was something I hadn’t expected. I think that was the reason they changed nurses every single day. The rotation of nurses didn’t allow for intimacy to grow between patient and nurses/physical therapist etcetera.

The Tuesday morning came when I’d await the arrival of my ride to the nursing home. No gurney was necessary because I was now semi-mobile in a wheelchair and I was commode mode so setting me loose was what my insurance called for. My husband and son were not allotted the time to look around at rehab places because conveniently a room had opened up for one woman, at St. John’s, I would be the one woman that the insurance insisted I take. 

Sadness, anxiety, and fear had all crept into my being as I was loaded on the van lift and taken to the nursing home/rehab across from the hospital I had called home for ten days. Gone were the days of very regular delicious meals that arrived between six and seven a.m., twelve and one p.m., and the dinner at five to six. Water refreshed and medication, always on time. The hospital was now a thing of yesterday.

My husband and I were escorted to the entry hall of the Home. A nice carpeted room with overstuffed chairs lining the walls, a fake fireplace was the central focal point and it looked cozy enough at a glance. We were met by a small older-than-me woman with tight curly blonde hair and a nurses uniform hugging her petite body.

“Welcome, Joni, let me get your vitals and we’ll wheel you down to your room.” 

I sat silently gazing off into space wondering just where it was I was being left. The vitals were fine and off we went, down a crowded hallway with patients lined up against one wall and equipment lined on the other wall. The patients looked helpless, hopeless and immobile, looking at me as if I was an alien that landed smack dab in their territory. 

I’ve been in nursing homes before so I knew kind of what to expect, but I honestly thought that there was a rehab wing that separates the long-term patients from us short-term patients that were just here for rehab. This was not the case. You’re not in Baltimore anymore, Joni. Back home my grandmother was placed in a similar facility but the long term/ short term patients were not together. The nurse I’ll call Bird because to me she resembled Big Bird but much smaller, she was the one who was in charge of the nurses on staff, her office was where we came in the door at and she met us there. 

I was wheeled down the hall as Bird explained that they were building a new wing to the home and for now the patients were being doubled up in rooms until construction is completed. Lucky me. Room number twelve is where we paused and she announced it as my room. Outside the door had a name and the picture of the tenant and below her was my name with no picture, just the note on the wall CHEMO PATIENT! Chemo protocols necessary. Gait belt needed.

I was wheeled into a tightly packed room of the current tenant. The room was about twelve by twenty-four, and I was wheeled back to the window where my bed was set and a side table all in about six feet of space. A commode was sitting against the wall where there was a bureau with a television on it. The home did not reek of the normal nursing home odors, for now anyway, so that was a plus.

My husband looked at me with pain in his eyes. He was horrified of the place where he had to leave me, where we had no options. This is the place where Post Traumatic Stress Syndrome, also known as PTSD would set in. There were two metal chairs in the corner and I thought, at least I can have two visitors. I was already traumatized by the whole broken femur and surgery, now this. The story continues.

My husband went to work in getting my flowers from his truck to place in the window for me and to bring me my blanket that the church ladies made for me, he wanted it to feel as nice as the hospital environment but knew full well, this was not the environment neither of us envisioned. The comforter that currently covered the bed looked old and wrinkled and the sheets had a clean but well-worn look also, but I wasn’t here for sheets and blankets, let’s move on. 

“Will you be dining in the cafeteria this evening with the others?” Bird lady asked.

“No, not tonight, thank you.”

She went on, “Dinner is served at six in the cafeteria, and if you eat ‘in-room’, you have to wait until the others are back in their rooms. About seven your meal should arrive.” She was looking at her clipboard, “I’ll let you get acquainted and come back.”

Eyes filled with brimming tears I whispered, “Thank you.” My date with hell was beginning.

My son entered the room. He was finagling his time between work, moving into his new place, and visiting me often at the hospital. Husband and son were both trying to get back to a routine of working and visiting me after work. My husbands only problem was that he needed to be home before dark since he cannot see at night to drive. My son would stay until seven maybe, if he could, then it was me, all alone in what felt like an asylum. 

My husband ran off to the store and came back with a new quilt for the bed. He was not leaving me in that mess. Both husband and son went to work to make the place comfortable for me as evening was drawing near. My commode was set next to my bed on the left in a tight space with the curtain of the other tenant pressed against it. On the right of my bed sat a nightstand and the wheeled tray? That barely fit in front of the nightstand. 

I was still basically immobile, I could not bend my leg and the pain was still evident with each move. I did wonder how well I would be taken care of here. The tears...puddled the floor only to be dried by the sheet hanging down off of my bed. 

The night was closing in and the goodbyes were the hardest thing any of us have ever been through in our lives together. I would be alone. Alone in the dark, only sounds of the echoing hallways would be heard and all that the hallways held in them. I would be strong for my two guys. I would be out of here in no time. Right? I have to be.

the story continues...

"My heart is steadfast, O God, my heart is steadfast! I will sing and make melody!” Psalm 57:7 (ESV)

The Story Continues...Miracles To ME!

Isaiah 26:9 (NIV) “My soul yearns for you in the night; in the morning my spirit longs for you. When your judgments come upon the earth, the people of the world learn righteousness.”

Miracles to ME

The staff that I had surrounding me during my hospital stay was quite amazing. My office oncologist paid me a quick visit when I first got to my room after the femur surgery. I would then be turned over to his colleague oncologist who works at the hospital, Dr. Biscuit. (I will not use real names!) 

Besides Dr. Slim, the surgeon who did my leg, one of my miracles was my oncologist who showed up at the right time in my journey. Remember the ER doctor gave me an oncologists name? It was Dr. Biscuit, I did not see him for my initial consultation. Dr. Bradley was the office oncologist who put me on oral chemo. Dr. Biscuit was all about IV chemo being the ONLY healer and I only met him AFTER I was in the hospital and already a patient with a protocol with Dr. Bradley. 

Dr. Biscuit and I never saw eye-to-eye in the beginning. His philosophy was one thing (slaughter/drugs/chemo), mine was the other (natural)! And you know who was whom, and you probably get a picture of who won. Dr. Biscuit is the one who WRONGLY put me on a stool softener, a steroid, something for indigestion, just a bunch of unnecessary drugs! After a bad night of stomach upset, (I won’t go into the gruesome details) I had a talk with the nurse about the DRUGS I was taking, she then put me in touch with Dr. Biscuit to straighten this pill mess out! 

I DID NOT need a stool softener! I drank tea in the morning, a NATURAL stool softener. He also had me drinking Ensure, another form of laxative! I told him NO, along with my pain meds, I wanted my vitamins A, B12, C, D3, and my oral chemo, that was it! It got changed very quickly I might add. Too many people just accept that the doctor knows what is best. A doctor DOES NOT know your body OR how it will respond. My body KNEW something was wrong with all the drugs and it let me know, too!

Then came Dr. Leeb, he was a radiologist. After a lengthy discussion with Dr. Biscuit, my husband, son and myself, Dr. Leeb would be the administrator of the radiation. NOT TO MY BREAST, to the spreading pain/cancer in my shoulder, and hopefully put a halt to what was spreading in my hip, the one that had surgery. The other hip, so he says, is too far gone, but we’ll start. Okay, all in agreement! Five days of dragging me across the bed to the gurney (in pain) to the x-ray table, then drag me to the radiation slab, then back to the gurney and back to my bed/room. This was hell in itself, but I endured. I’d also endure ten more days of radiation on my leg, from the nursing home.

My room number was 3203 by the way - my birthday - 3 23. Another top question was, ‘what is your pain level?’ On meds it was a four-five, on the dragging me all around days, the pain was at a 7-9. MY BOWELS ARE FINE!  Yeah, I was tired of that one but… little did I know, a reaction to the oral chemo I was taking, was vomiting, diarrhea, lack of appetite, and skin changes. Peeling ugly pink skin. NONE of which I had, and that PUZZLED the doctors. I was in the rare 30 percentile of ‘not affected’. Good to know two weeks into the DRUG intake.

After the doctor and I were on the same page, we got along better. He came in one day with his how are you doing, any changes banter, then he said something, yes, to ME a miracle was taking place. His exact words were, “After reviewing the x-rays and bloodwork, and upon physical inspection, it seems that the oral chemo is working. Whatever we’re doing is working.” My lymph nodes were shrinking, my tumor was shrinking, my x-rays were showing physical signs of my leg healing also. All was good. Little did they know that not for one moment was I attributing the Chemo drugs to being the reason I was healing. 

You see, all of that was happening BEFORE I started the Oral Chemo, but the OC I believe sped up the healing, along with my vitamins! I may be onto something. We had a discussion about my protocol and he had mentioned that the people in Europe reacted the same way to the Oral Chemo as my body was reacting. In America, 70% of people were having adverse reactions and THAT is why they were not recommended. I told him it all had to do with my diet and nutrition! His comment? “Are you going for a Nobel Prize here? A conference of doctors have already surmised it was the diet but we hit a dead end.” HA! I’m onto something friends! Believe it or not, I was having a positive effect on him also. His final words to me on his last visit was ‘Godspeed’! 

Another incident I had was with a wound care nurse. She was sent to change the dressing on my breast. As I had told you all in previous posts, that my breast leaked and therefore after bathing it with saltwater, I placed a non-stick gauze over it to protect my garments. Since entering the hospital I had not changed the gauze and I knew I was in the best place for it to be seen and taken care of. I told her it was ugly before she proceeded to take off the gauze. She said, “Oh my.” I was taken aback and asked, “Is it that bad?” She replied, “Not at all, it looks GOOD. What were you doing for it? I know you were taking excellent care of it, that’s for sure.” A deep sigh of relief washed over me. I told her about the saltwater bathings. She agreed that it looked well taken care of and that she had seen much worse case scenarios with breast cancer patients, so yes, to keep doing what I was doing. We’ll take the best care of it we can here, she said, and they did take the best care THEY could. 

Then there was the Palliative nurse, Jan. She was the nurse sent to be on my side and didn’t allow the doctors to bully me, but remember she works FOR the hospital. She was a semi-tall sweet woman with short bobbed blonde hair. Her voice was very soothing and relaxing and I felt comfortable telling her anything. She visited me daily, allowed me to cry on her shoulder, offered options to heal, and didn’t allow doctor Biscuit full reign of the floor.

One day I was sitting in the recliner (as opposed to being bedridden) and Jan upon seeing me, smiled, she was pleased with my progress since seeing me the day before lying in the bed. She said to me, “I have a little something for you,” she put out her hand and offered me a small book and went on to say, “This randomly fell onto my desk yesterday out of the blue as I was going through stuff on my shelf. I looked at it and thought 'who would benefit from this, Joni' that’s who.” It was a book of daily prayers and affirmations. I smiled, I cried and offered her a hug. Such a dismal reason to be in the hospital but God saw to it that Light was brought to my door on a daily basis! I tried to offer the book back before I left the hospital, thinking it was on loan but she said, “Oh no, you keep it, that book was meant for you when it fell on my desk!”

Then there was the visit from a clown. Yes you read it right, my mother-in-law and I were just sitting there chatting and my husband had gone home to shower and in the room walks a clown. “Would you like a visit from me and my friend?” She was holding a stuffed monkey. I had tears in my eyes and exclaimed, “YES! I need a visit to cheer me up, no offense, mom.” Daisybug the clown went on for twenty-five minutes of corny one-liner jokes to make my day. God really does know me and knew what I needed to cheer me up!

The list goes on and on of the miracles that happened those twenty days I was away, and this list is just some of the ten days I was in the hospital! I had wonderful physical therapists who visited daily and would leave me with exercises to do myself and I would leave them with laughter and smiles. That is what made me so strong in ten days to be released. I had attentive nurses and one day an intern stood for an hour detangling my long hair that had gotten itself knotted in just a couple of days.  I was being transformed from immobile to mobile, from bedpan to commode mode, from weary and teary to beautiful laughter and smiling. It was now time to be released. A single flower from my vases was handed to nurses, doctors, interns, physical therapists, home health aides, cafeteria workers who brought me food, and even the cleaning ladies! Anyone who helped me in any way, I gave to them a smile and a gratitude flower. My work here was now complete.

Psalm 95:1-2 "O come, let us sing unto the Lord: let us make a joyful noise to the rock of our salvation. Let us come before his presence with thanksgiving, and make a joyful noise unto him with psalms."

The Story Begins - ER visit One

2 Cor.12:9 "And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly, therefore, will I rather glory in my infirmities, that the power of Christ may rest upon me."

ER visit One...

The first ER visit was the one that got the pebble rolling wherever I was being led on this path. The ride of a lifetime was sweeping me into its arms. And so the journey began. I'm not going for time consistency right now and will get back to it at the editing phase and make the timeline more clear. After the first ER visit, everything seems a fog, it was the first time in many many years that a hardcore drug entered my body, Percocet.

I couldn't breathe that night, my chest seemed to be tightening, the air in my lungs minimal and by morning, Steven accidentally missing his alarm, called for him to be at home that day and me needing to be driven to the ER. We drove to the Emergency Room entrance, pivoting to a (hospital owned) wheelchair, making it from car to hospital sign in, the formality and tagging began. This is where my birthdate would be the most uttered words over the next couple of months.

The ER2, 3, and 4 were all maddening visits in their own stage. While in ER1 I was told what the x-ray had shown. That my disease had metastasized (spread) to my liver. "Mets to the liver," he said. I didn't blink. I sat, I stared and quite honestly thought, 'and so it begins'. Don't ask me what 'it' was, I hadn't figured that part out but was assured in the deepest depths of my being, my sacred place, that I would know, and also I would know when it was time to share.

I left the hospital in tears, only a cane in my hand and my husband by my side. A blur, that is the only way I can describe it. I felt like I wanted to shelter this news in a cocoon and allow only one or two (okay, maybe three) people know that I was now Stage 4? I think that's what they call it when it has spread. Hey, some is still a blur. I'm still in my healing phase. It was at this time that I was told that I should use a walker at all times and think about getting a wheelchair. I should also make an appointment with my GP (General Practitioner) if for my pain and my inability to breath should I need medication to continue. The spot, I was told, was pressing on my lungs, making it feel like the air was being restricted. My oxygen level was 97%. 

Rolling right along I went. I made a GP appointment and thus began the struggle between illness and law. She was hesitant in prescribing Percocet 'because of the 'LAW', so she prescribed a delicate drug that did minimal assistance to my pain. Being raised in MG's placed me in the ER again, the pain too much to bear.

ER2 found me visiting by my first ever ambulance ride. Unable to breathe and a lot of pain in my lower extremities. The meds my GP gave me, obviously were not working and little did I know that the Opioid crisis running rampant across the nation would imprison medication to aid me but could be prescribed for 30 days only, then its, "SUFFER American, your illness means nothing to us, we have a drug problem here!" My illness is defined by legalities, stigmas and the good old Almighty Dollar! UNLESS you find a caring doctor.  

This doctor had NO PROBLEM prescribing my medication. I am Stage 4, what's going to happen to me, I'm going to become addicted in a couple of months or worse overdose and die? Get in line, we're all going to die some way somehow eventually and DRUGS are NOT going to take ME down! BUT I was now given a choice. I was ‘encouraged’ to go the chemo route. I was gently nudged to an Oncologist. I also sat nodding my head in utter disbelief I was going through this. I needed my son and husband. I had no idea what to do.

I think this is where I hopped on the merry-go-round for a spell. FEAR wrapped its long fingers around my neck gripping with flames of fire. Messages, mixed and otherwise were scrambling through my head. I heard them but I could not discern. Surely enough, I was on the fatal merry-go-round from a Ray Bradbury novel.

Friends and family were getting concerned, seeing that this was my second visit to the ER after all. I made the decision to see an Oncologist. Miracles were evident and prayers were being answered at this time. Some people like instantaneous answers to prayers but I AM LIVING PROOF, prayers are answered in the most minute ways. You might not see Steven missing his alarm clock as an answered prayer, but had he been at work and I, home alone? ER visit 2 brought me to a possible third oncologist looking at my disease since last year.
Think about the ramifications had God not intervened.

To be continued…

“Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.” 1 Peter 4:10 (NIV)

Light Through the Dark

Colossians 3:16 “Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.”

Godliness with contentment is great gain

When people are hit with adversity, how they react defines who they are. When you whine and cry and want a shower of pity to fall around you, you are not shining a light on the power of Christ you’re shining a light upon yourself.

Many Christians define themselves by what they are going through, how bad their life is or isn’t, and all the pain they’ve suffered over the years, this is what defines who they are today and where they will go tomorrow.

When I was given the diagnosis of a lifetime, in that very moment of being swept away for tests upon tests, that I didn’t ask for, by the way, I shut down. For those hours in the day of being wheeled from CT scan, mammogram, biopsy etc, I was not myself, I allowed darkness to swallow me. I allowed myself briefly to be swept away in my own pity. I cried and cried, hours on end until it felt as if my eyes were bleeding.

I perceived the experience as if my very body walked through the pits of hell and it was not a place I was all too familiar with. Since becoming a Christian I had been through many fiery trials but this one was different, this one wasn’t one where everyone else who went through the pit came out alive. I needed to tighten my faith.

When I got home after leaving the pits of fire, I had time to pray, to contemplate what happened and ask, “God, what will you have me do, for YOU?” I did not ask the 'why me' scenario. I didn’t cry out that I’m not strong enough for this path set before me. My first thought was how can I shine the Light of God through this diagnosis. Sure enough, He showed me the way and that is the path you see me on today.

I’ve seen so many people face this illness over and over again. And as unique as this condition is, so is how each individual handles their treatment and all that we’re faced with.

I know of many people who will stay in the pits with fears, pain, loss, drugs, and medications, along with self-pity only because they won’t ask God, what would He have them do. When in the flames of the moment, it is just too hot and the focus is on the self and the urgency of take me out of here now, when all along we needed praise God for the chance to shine the Light on Him, not us. 

Yes, being in the pits are hell, yes it feels as if the fire will consume us, yes it feels like the pain will drown us in quicksand but rest assured if you take a chance and jump with faith, He will catch you. Another problem with people and their faith these days is it just doesn't happen quick enough, there is no patience in pain. I’m sure you look at me and say under your breath that I don’t know hell until I’ve been through what YOU’VE been through. I don’t say that lightly. What I’m saying is that your hard life is no worse than anyone else’s hard life. We could sit around for weeks and months comparing notes on who’s had it worse but is that getting anyone closer to God? Of course not because that is not where God resides in the midst of pity parties. That is not the path God chose for us as Christians.

The celebration God resides in is the one where He showers you in confetti when you’re praising and singing His name in the throes of the pits of hell. Are you afraid of dying? If you’re a Christian, do you understand there is no death, you are promised eternal life so why live your life in a pit of despair if you are carrying the promise of God? Walk boldly carrying your cross!

I think of the story of Shadrach, Meshach and Abednego and King Nebuchadnezzar asking them to worship his god. Did they throw themselves a pity party before going into the fire? NO! They didn’t fear, you know why, because their God promised them eternal life, they had nothing to lose and everything to gain by shining the Light on God and not themselves.

We’re all wandering around in a world of ‘you don’t know what I’ve been through’. Let me tell you, I can guarantee Jesus went through ten times worse. I never once heard/read that Jesus preached a woe, woe is me story. No, every step of his pain He cried out to God and glorified HIS name, not his own. While hanging on the cross he cried out, “Why has though forsaken me?” The rest is history because God did not forsake him, He gave him new life, eternal life! Breathe that in for a moment.

Now don’t get me wrong I’m not saying the path you chose is not the right one for you, we each have a different path that is going to hopefully get us to the same destination. I have every bit of faith in where I’m headed and it surely isn’t in the pits of hell. I will walk on singing the praises and glory to God in the midst of this illness. My focus is on Him, not the bible, not the verses, not touting He said this and He said that, no, my focus is on HIM every step of the way and my sharing this with you is my way of leaving behind the path that *I* choose to walk, I choose to see the Light through the dark. 

Alleluia Amen!

1 Kgs. 20:22 “And the prophet came to the king of Israel, and said unto him, Go, strengthen thy self, and mark, and see what thou doest: for at the return of the year the king of Syria will come up against thee.”

“There are times when solitude is better than society, and silence is wiser than speech. We should be better Christians if we were more alone, waiting upon God, and gathering through meditation on His Word spiritual strength for labour in his service. We ought to muse upon the things of God because we thus get the real nutriment out of them. . . . Why is it that some Christians, although they hear many sermons, make but slow advances in the divine life? Because they neglect their closets and do not thoughtfully meditate on God's Word. They love the wheat, but they do not grind it; they would have the corn, but they will not go forth into the fields to gather it; the fruit hangs upon the tree, but they will not pluck it; the water flows at their feet, but they will not stoop to drink it. From such folly deliver us, O Lord.” 

― Charles Haddon Spurgeon