The Story Continues

John 7: 16-17 "Jesus answered them, and said, My doctrine is not mine, but his that sent me.

If any man will do his will, he shall know of the doctrine, whether it be of God, or whether I speak of myself."

The Story Continues

The story continues. As you know I've been having side effects from Herceptin; pretty major ones too, and I was fearing to go to the doctor. Earlier in the month I had my issues, Hubby had his unending cold/pneumonia, the road crew had their issues with digging up the roads after the flood and my house had its problems with the toilet leaking water all over the floor, in the basement and also the roof needing a major renovation, not having been done in twenty years or so. Then there was the sale of the property and the takeover by the new landlord. Whew, what a month of May, and it isn't even over yet.

The month May blew in with winter still hot on its heels. Yes, winter, meaning 35 degrees at night, meaning heater clicking on during the day, meaning cold in this drafty old house. I don't even know what issue to tackle first. How about small to big? 

The flood. Washed out roads all over Nebraska and we being way on the outskirts of town saw our road dwindle and wash away. The graders who tried to grade the road saw there was nothing to grade so a new plan was in place and that was to the pave the old dirt road after I don't know how many years. I know it's been a wish of mine for some time. That was at the end of March and beginning of April but storms and cold kept them from work. A month later in the middle of May, we're now seeing signs of the paved road and people can almost go back to normal. Almost...still a five-mile detour routes and we wait.

The house sale. Sitting at my desk my husband turned to me from his desk announcing, "Well it looks like it's been sold." I knew he was referring to this, I think it was 124 acres of land, out here for sale with our houses on it. I didn't know whether to be happy or relieved that someone might finally come and take care of the place. 

Let me refresh your memory. There's my neighbor, who has a nice house but seeing she is hoarder, that niceness gets swallowed up by what we might deem as trash. Then there is the trailer she once rented but kept for her, at one time four dogs, which all have passed except for one. But pallets and empty blowing flower pots, cars and trucks ruin that of ever becoming anything but a trash heap. Hopefully, someone saves the dog.

The landlord came and introduced himself a week later and he seemed like a nice enough man with his wife in tow. I'll just call them Jed & Josie. Good Christian folks too. I don't know, there is something about Christians that exude a living God and well by no mention of religion but casually mentioned they attended church on Sunday, I felt they were good people. He said he'd like to have our dilapidated roof looked at right away before it ever becomes a problem. I like him already!

Year after year each time an internet guy went on the roof he informed us to inform the owner of the bad roof, but nothing was ever done. The old landlord would come around and plow the grass after it got waist high, and trim trees, but year after year the grass and trees came back in full force.

Not this year, this year would be a different year! It would be the year of floods, rain, cold, and nothing but my Salvia flowers survived. That's how cold it got, everything froze under there. May 19th finds us rising to 40 degrees with 38 windchills and our small space heater coming in handy. Mind you it was in the eighties all week.

And wouldn't you know it, this was the week that the toilet would leak, through the roof, to the basement and an ensuing mess followed. This landlord was not concerned with a patch job on the toilet, like the previous landlord had been for years, no, he wanted to rip up the floor, have the toilet fixed and new tile laid! He wasted no time!

Now the roof. What should have taken one day to redo, they were met with numerous patch jobs from the previous owner, and had a four-day job on their hands! They were going to come Wednesday but changed it to Thursday. Thursday at six am. they arrived. By afternoon it was quite obvious the job would not be done in a day and by Sunday after much death of plants and destruction of what little garden I had, was now gone.

And to top it off, the owner on Saturday decided to rip down thirty-year-old trees that were breaking up concrete in his huge shed. The trees needed to come down. But on the day of the roofers? My anxiety hit an all-time high and an attack ensued. I was being picky, wasn't I? I had tolerated the barbaric treatment of my garden for three days but this day hubby had to work. 

I was good the other days sleeping through much of the chaos but Saturday, the neighbor who was now roofer, allowed his kids over and the screaming kids and hollering men mixed with hammering, banging, and heavy machinery moving trees, yanking trees out by the roots, and 100lb. me in a wheelchair. The pain was at an all-time high, everything happening blindly overhead and the curtains weres drawn tightly closed so as not to see the animosity surrounding me. Hubby came home around two pm. to make sure I was okay and I wasn't. Full-blown anxiety attack!

I won't share the ugliness of it all but by Sunday I was feeling somewhat better, but guess what, by the end of Sunday it started to rain and they were ALMOST finished. Really just a matter of cleaning their mess which they would tie down and come for on Monday. Monday came...and they didn't.

The owner came Monday, in the rain and had his Bobcat move a lot of the material tied down, and a bucket to the roofers' other piece of equipment. One trailer still smashing my plants and garden ornaments stayed (about twenty-foot long) and another sits out in the middle of the lawn smashing the saturated grass.

Chin up, Joni! Two doctor appointments today and one tomorrow, you NEED your strength for the unfinished paved but muddy roads. The Lord has tossed me a cyclone and I'm making a small tornado out of the situation. I have no choice. I'm sick, the events are upon me and I have to move on. We still have two more days to get through and the weatherman says about two-and-a-half inches of rain before all is said and done, on a state that has already declared flood disaster. Lord be with me NOW!

Prov. 4:10-11 "Hear, O my son, and receive my sayings; and the years of thy life shall be many. I have taught thee in the way of wisdom; I have led thee in right paths.

25-26 Let thine eyes look right on, and let thine eyelids look straight before thee.

Ponder the path of thy feet, and let all thy ways be established."

Salvia

Not Good

Pss. 63:3 “Because thy lovingkindness is better than life, my lips shall praise thee.”

When people ask me how I’m doing, like everyone else I say fine. They’re happy with that and offer me to ‘keep it up’! I’m not lying I just don’t want to get into the gist of what I feel is a failure. My husband, son, and mother-in-law don’t see it as a failure but I do. I feel like I’ve let myself an everyone else down. I come down pretty hard on myself.

I’m lying to myself more than anything. I want to be fine and believe I’m going to be fine but getting from point ‘A’ to point ‘B’ is a whole different matter. I accepted the easier of the chemo routes meaning not the kind where they slice, dice, and radiate you, then place what they call a ‘port’ under my skin to fester. The port is the loading dock for the poison they’d administer. No, I took lethal injection instead.

It has been nothing but lethal since the first ninety-minute injection where the side effects were tearing me up from the inside. They lied and told me it would get better; the chills and hard pain should subside with each dose and after the third dose I see no change in side effects except them getting worse. Had Allison been more concerned with the patient than the kickbacks from the Femara she kept trying to push, maybe she would have known about the swelling.

The last visit I had was two weeks ago and Allison, whom I think is the doctor’s assistant came in and saw me instead of the Dr. himself. I guess he was too busy and bears the weight of the patient load. For some reason when they ask you how you’re doing, and you tell them, they spin your words. 

“I’m not good. I’m in a lot of pain from side effects,” I say.

“Oh, they get better with time. Some women don’t even know they’re getting chemo. So, why don’t you want Femara?” There it is, the sale of drugs.

“Well, I know I don’t like the side effects, but I’ll push on. Not with Femara though, something milder the doctor offered.” 

The argument. “Chemo has saved millions of lives, you know?”

“I’m not getting into this conversation, it upsets me.” She knows this, I’ve seen her before. She pressed on until I was in tears and she was (unapologetically) apologizing. She knew what she was doing. They push the fear and scare tactic buttons until you’re a hot mess. Needless to say, she didn’t check my heart, my swelling, or my pulse, all that are normal things to check for in a visit. She was too busy trying to sell her drug.

I was going to give this weeks Herceptin a try, so off I went for my thirty-minute poison pump, where they pump the ‘juice’ into my veins. Afterward, at home, I ate and thought all was right with the world, I was feeling good, then the pain came like a freight train barreling down the tracks. I’ll never eat again, is what I said over and over in tears, wrapped in a blanket, and now in bed at five in the afternoon. This was the norm when coming home from the chemo trips.

A couple more days followed suit and it hit me, that since my first treatment what was once a vital woman was now a shell, a crippled woman trying to make it through each day. I was waking sad, sore and depressed. I couldn’t do my exercises that for seven months I’d been doing. I was just wheeling through the house, using my walker too, but the cane… it became a hindrance and I haven’t used it in nine weeks, almost twelve weeks.

Now when people ask how I’m doing I say, “Not good.” I just can’t lie. When I said I was doing okay, I was! I was walking, exercising, cold or not I got out of the house, intermingled with human beings, I was good. WAS being the operative word. Say your not and poof, everyone disappears. They’ll be back when the word is ‘good’ again. Not good is negative (I know) and brings them down. I don’t blame them.

My mother-in-law emailed me last week and asked if she could come out for a visit, bring me some flowers (for the outside) and I said YES!! Need anything? FRESH RIPE tomatoes! Lol So I was getting a visitor besides my son! Wouldn’t you know, we had so much rain the roads are a muddy mess. It was warm that day and she wore shorts and I told her, this week you’ll be bringing the coats back out! We are all in amazement of this crazy weather. Surprising tornadoes in the city of Lincoln, rain, high winds, cold, chill, floods again, if not, washed out roads! Just a mess, just not a frozen solid ground mess.

Then last week the pain hit me hard. I was having adverse reactions and needed to call the doctors office and let them know. I wrote about the ‘normal side effects a few weeks ago, like sleep problems, nausea, muscle pain, abdominal pain, loss of appetite, tiredness and more, so many more. But there were also the bad side effects. I remembered the swelling but needed to look and see what else I had.

Serious Reactions:
bone pain,
increased coughing,
swelling of the hands/ankles/feet, MY ONE FOOT IS SWELLED LIKE A BALLOON
sudden unexplained weight gain,
unusual tiredness, I FEEL SLEEPING TWELVE AND FIFTEEN HOURS IS NOT NORMAL
severe headache,
tingling or numbness, MY LEFT-HAND GOES NUMB/ NECK TINGLY
mental/mood changes,  I THOUGHT IT WAS NORMAL MENOPAUSE CRUD
fast or pounding heartbeat, and  YES
easy bruising or bleeding.           YES (WHERE’D THAT COME FROM)

I  called and told the nurse Navigator I was experiencing adverse reactions. She said to rest and put my foot up and see if that helps. It did for a couple of nights but that was it. Only my left foot is swelled. And… and… “I’ll take care of the scrip for ya. Ok, bye.” This malpractice is in their court, not mine!

I’m giving up on Herceptin and to me feels like I failed. But wait I didn’t, the DRUGS did!

I know I didn’t, and everyone will tell me so. I go this week for what the docs office thinks is a Herceptin trip and to their surprise, they’re getting me and all my adverse reactions, FINALLY, but no more Herceptin, on to a new plan, Doc! I hope I make it that far, until Wednesday!

There’s more going on that I need to tell you, I’ll call extenuating circumstances! 

TO BE CONTINUED….

Pss. 119: 78 “Let the proud be ashamed; for they dealt perversely with me without a cause: but I will meditate in thy precepts.”

Pss. 119:17 “Deal bountifully with thy servant, that I may live, and keep thy word.”

God Bless!

Lost: I'm searching

2 Sam. 23:4 “And he shall be as the light of the morning, when the sun riseth, even a morning without clouds; as the tender grass springing out of the earth by clear shining after rain.”

The days leading up to...

The days leading up to a chemo treatment are usually filled with anxiety. I try my meditation, my prayers, my refocusing of daily chores and hobbies, but still, I find I’m normal, in so much that, anxiety leaks through. 

I’ve been having good days filled with a lot of pain at night on my right thigh. I guess this is normal too, one of those lovely side effects. I try to understand what I signed up for but I honestly have no clue. I know I signed up for intravenous Herceptin, with no port, and it has side effects. What does it do? Well, one thing it doesn’t do is cure the Big C! It kind of sings it to sleep. 

Why do people assume that chemo is a cure? Do you not see the commercials from the ACS begging for money to help them FIND a cure? Sure they have treatments to prolong your life, but cure? THERE IS NO CURE! Just had to shout that out to those who are reading.

Here are the  COMMON side effects of Herceptin:

Diarrhea - nope
redness or irritation at injection (IV) site - well duh all needles have some pain/redness
muscle/joint/back pain - YES
stomach or abdominal pain - somewhat
Headache - not really
sleep problems (insomnia) - nope
nausea and vomiting (may be severe) _ thank God NO
weight loss - I sure hope not! Hard enough finding clothes now!
Rash - kinda
altered sense of taste - is that what that is?
mouth sores - nope
loss of appetite - still eating like a pig!
Tiredness - most definitely
cold symptoms such as stuffy nose, sinus pain, sneezing, or sore throat. - Runny nose, does that count?

Tell your doctor if you have serious side effects of Herceptin including:

bone pain,
increased coughing,
swelling of the hands/ankles/feet,
sudden unexplained weight gain,
unusual tiredness,
severe headache,
tingling or numbness (e.g., in the hands, feet, leg),
mental/mood changes, - going through menopause, so yes, before Herceptin days.
fast or pounding heartbeat, and
easy bruising or bleeding.

I don’t know the difference in BONE pain and muscle pain, I somewhat have an idea after breaking my femur. But…

THIS is the other DRUG he wanted me taking and I refused. The COMMON side effects alone scared the pants off of me! 

Common side effects of Femara include:

hot flashes,
warmth in your face or chest,
hair loss,
joint/bone/muscle pain,
tiredness,
unusual sweating or night sweats,
nausea,
diarrhea,
dizziness,
trouble sleeping,
drowsiness,
weight gain,
weakness,
flushing (warmth, redness, or tingly feeling),
headache,
constipation,
numbness/tingling/weakness/stiffness in your hand or fingers, or
pain in your hand that spreads to your arm, wrist, forearm, or shoulder.


I would hate to see what the more serious side effects are! When a trusted doctor tells you the side effects are a lot like menopause I beg to differ!!! Unless I’m a rarity among women!

This is MY choice of estrogen blocker that I showed him last Wednesday to see if he’ll ‘allow’ it in my regimen. I’m not giving him a choice.

DIM partial list of side effects:

This is not a complete list of side effects and others may occur.

One of the supplements used for estrogen dominance is diindolylmethane, or DIM, which is a natural plant-based chemical found in many cruciferous vegetables. The effects of cruciferous vegetables, such as cabbage, broccoli, and Brussels sprouts, are being studied as a treatment for cancer.[1] DIM works to create a healthy balance of estrogen and testosterone in your body and is available in capsules or tablets.

DIM Supplement warnings:
If you have a hormone-related condition, make sure to discuss DIM with your doctor, because it can sometimes block estrogen activity. Taking larger doses can be unsafe; possible side effects of using DIM supplements include headaches and nausea.

DIM Side Effects and Interactions
DIM is considered to be safe when consumed from natural sources at doses 100-200mg daily. Taking larger doses such as 600 mg each day, may cause side effects such as headaches, upset stomachs, and can cause reduced sodium levels in some people

TO ME, DIM is much safer than Femara and does the same thing in a natural way, albeit a tablet form. Yes, I’m still on a plant-based regimen! 

The Day of Dread and Doom came and looking for a chair in the chamber was almost impossible, filled with souls getting poison pumped into their systems, bald and aging, wrinkled and sagging. And then there was me with a puzzled look on my face wondering what on earth I was doing there.

The quick session was over (thirty minutes) and I was promised this one would not be as bad as the first session with the chills and pain. It was a lie as I arrived home, I went right to the bedroom cringed in pain, popping pill after pill to try and relieve some of this tension-wracked pain nursing my body and feeding the angst and desperation I never knew before.

Three hours of crying and wriggling in pain, I finally fell asleep. I woke but didn’t want to. I hurt like I’ve never hurt before. Eight years of arthritis and no meds, pain bearable but now, this pain was exhausting and unending. My mind was not accepting this. I did not in no way shape or form want to finish my life out in this kind of angst that is driving my body into the grave. My mind, almost gone. Is this what menopause is like? I don’t think so. Thank you, doctor, for bending the truth YET AGAIN!

Oh and my DIM supplement? He laughed in my face and offered me up another drug to kill me with less side effects. I said no ten times but his ears were obviously clogged so I appeased him, ok doctor, maybe next visit in three weeks.

It has been almost one week and I still feel like the crab on the ocean floor, sucking down the toxic poisons left behind. I still have my hard shell, I can still crawl and be plucked out of the water at any moment but for now, my body is filtering poison through my system and it’s not a pretty sight. Have you ever opened a crab up? Have you seen the filters and the yellow gunk that you’re told NOT to eat of the crab, just the meat? I don’t even have meat left to eat. I am a shell. My yellow gunk is on display. I have maintained my body weight since September, so I know I'm still fighting! 

My husband and son see this change in me; at their wit's end and hubby being sick with walking pneumonia, this isn’t going to fare well. Mother-in-law came out and I feel like she thinks this chemo is the cure-all I need and is good for me but then not after I tell her how it makes me feel. But then again, no one has a clue of the pain and isolation chamber I feel locked into.

I was strolling along enjoying life. Going to physical therapy three days a week when suddenly the rug was pulled out from under me and I fell, hard. Now, I get to the outside world, if I’m lucky, every three weeks for chemo. A doctor visit here and there. A stare out the window, a walk to the back door, and life going on in every way without me. I’m a shell with two eyeballs looking left and right and wondering, is someone going to get me out of here? 

I wake in the morning and don’t like who I see. I’m filled with anger, disgust, discouragement, hate, bitterness, pain and misery; all of these things are foreign to the me who just a month ago was enjoying the physical therapy, loving life and feeling God deep within every step I took. Now...it’s only fitting that during Lent, the season that is being swallowed up around me, I should be tempted and filled with everything the dark lord stands for. 

I’m here...waiting for the crab net to come swooping down. Run along now...it’s not a pretty sight.

Pss. 95:8 “Harden not your heart, as in the provocation, and as in the day of temptation in the wilderness:”

I’m hanging in here, Lord. Don’t leave me dangling...

Isa. 58:8 “Then shall thy light break forth as the morning, and thine health shall spring forth speedily: and thy righteousness shall go before thee; the glory of the LORD shall be thy reward.”

The Chemo Journey

1 Sam. 1:15 “And Hannah answered and said, No, my lord, I am a woman of a sorrowful spirit: I have drunk neither wine nor strong drink, but have poured out my soul before the LORD.”

The Chemo Journey

Preparing for the inevitable chemo Herceptin was an anxiety driven road riddled with potholes. First with the, “We need to see if your heart can handle this drug,” to “Come in the day before treatment to have your blood drawn.” All while having to say my goodbyes to the wonderful young lady who brought me this far in my Physical Therapy recovery and her team that I had grown to know and love over seven months.

A rollercoaster of emotions that I’m still not sure I’m doing the right thing but I was powering through like a champ. The heart test was tedious; take my blood, wait thirty minutes, put my blood back with some kind of drug that would identify if my heart was pumping. Into a tube after putting those lovely sticky nodule things on my chest and into the tube for twenty minutes of picture taking. I wouldn’t find out the results until chemo-day.

Even the day of drawing my blood was filled with anxiety as the lady who drew my blood was not the regular lady and it kind of hurt this time with the wiggling of the chair's arm. My arm was at an awkward position, thus the needle hurt going in and when she was done, she pressed on some cotton that didn’t feel too good but again, I was pushing through the day. Test results wouldn’t be available until the next day, chemo day. 

Chemo day arrived and my anxiety had hit an all-time high. There was no form of meditation or prayer calming me that’s for sure but again, trudge through, rain and all. I did want to go to the Mall and the Pretzel Palace where they make fresh soft pretzels. The day before we went there and met up with my son and he said he'd like to do that again on chemo day if I didn’t mind. Mind? Hubby, son and a soft pretzel equal heaven to me! And an FYI, NO, I'm not supposed to be eating it but at least I passed on the melted cheddar cheese that you could get with the pretzel. It was definitely comforting food for me in a hard time.

This was also the day the flood waters began to show signs of keeping us from getting out of the house. Hubby had been having troubles with his truck and hadn’t driven it much this winter and there was no way our already previously flooded out driveway would allow our car through. The water was rising, the substation across the road was covered, surrounded by water as I’d never seen. I was ready to cancel.

Hubby, determined to get me the doctor on Chemo Day, tried his truck, it started right up. He revved and revved, turned it off and on a couple of times and he was good to go! I wasn’t ready but he and the truck were.

As we swerved around the bend to slosh our way to the entry of our driveway, we saw what we were in for. The water around the substation was now crossing the road. The truck stalled, rev it up, stall. “Let’s go back,” I said anxiously. But instead, the next rev of the engine had us swerving on our way, up the muddy dirt road, where the ditches were almost level with the road beside them. On we went.

I had texted my son that we were on our way and would meet him at the mall at the Pretzel Palace. A relaxing visit that eased my anxiety and found me not in tears heading off to the Chemo that I was still against but trudged on anyway.

Arriving at the set time, slumped over and sad, I could feel my smile was a frown. I was not happy to be there and the thoughts of being a small child being led into a gas chamber weighed heavy on my mind. The weigh-in was grim. The hellos were stilted and the waiting for someone to come in and tell me what was next was like waiting for a dentist to yank out a wisdom tooth! I was so glad to have my husband by my side, but I could see that he too was tormented with confusion and uncertainty.

After a forty minute wait, the twenty-minute idle chit chat of the PA sent me off to ‘pick out a chair’ and they’ll set you right up. The room with the chairs was like looking at coffins to pick out. All looked like nice comfy recliners with chairs beside them for guests, but the recliners themselves looked like a deathbed. I feared that room from my very first day of diagnosis and now here I was, a victim to be sat in ‘the chair’.

As I, with a head of thinning hair sat and looked around, there was elderly bald folk hooked up by a port to get their poison. A thin young bald guy awaited his blood to be drawn and another lady waited for a shot in the stomach. Oh, the torture. I was about to cry when my doctor appeared saying he had a cold so he wouldn’t be shaking my hand today and asked if I was okay and had any questions. I had hundreds but shook my head no, tears now brimming my eyes. More idle chit chat that I didn’t hear and the nurse appeared with a needle. “You don’t have a port?” She asked quite shockingly like why are you here?
I told her no and she proceeded to stick a needle in my ‘bony arm’ and the juice flowed. For ninety minutes, with my back already in pain, I would sit as the poison flowed into my veins. I was now a victim of chemo. Outside the window, the sun briefly shone. Days on end of clouds and rain and here I was on my deathbed and the sky opened up and let the sun out to dance for a while.

After the ninety minutes were up, the nurse came back to flush something in my arm and I’d be there another ten minutes. This was almost a three-hour visit! I was hooked up to a blood pressure machine also, as this form of chemo affected the heart and they wanted to monitor me. I watched my blood pressure go from 115 to well over 140 by the time I left.

I rose to leave. Weakened, I almost dropped. My back in utter pain. Walker in hand, I made a beeline for the door, with my husband in hot pursuit. Walking past the front desk smiley receptionist says, “Is that all for today?” I wanted to tell her to go… nevermind… “I’m fine, thanks.” And walked out the door to be met by dark clouds, a chilled swift breeze and a mist starting to fall from the sky. The sun had run away too!

The chills, the pain, the anxiety, the sadness, the fear, the glazed watery eyes, the mud-puddles pretending to be roads all made their presence known. I will wallow in self-pity and figure out what I do now. Where does one go from here? 

TO BE CONTINUED…

There will be the REST of this story.
Please, no harsh criticism.

Pss. 18:4-5 The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me.

The Bombardment: Doubt and Fear

Baltimore, Maryland - Fort McHenry

The Star Spangled Banner was written out there

Pss. 57:6 “They have prepared a net for my steps; my soul is bowed down: they have digged a pit before me, into the midst whereof they are fallen themselves. Selah.”

This week and last week I’ve been hit with a bombardment of emotions. I’d wake in the morning to tears, look out the window and all I saw was a dense fog, so deep there was no seeing a light, a blade of dead grass or even a winterized tree, just deep snow packed lawn, fields and a mist.

It all began as a flurry of uncertainty the minute I accepted chemo as a way to heal this crud. If you all have been with me throughout this ordeal you’ll know I’m dead set against chemo (no pun intended) as this being any form of healing. I see chemo as a death sentence and I can’t get past this unnerving grating feeling deep inside me.

At the beginning of this trial, the only family member I told was my niece. She was the only one I trusted to care. My hubby told his family also. I had expected care and compassion to crawl out of the woodwork but say the words ‘alternative’ to a conservative nation, you’re going to be met with a bombardment of questions and doubts and a sort of wall to be built that you’re not allowed over. All negativity I tried to avoid came creeping in, in unexpected ways! 

Here I am two years into this affliction and I’ve grown and have learned so much! My diet was never bad, I’ve been 125 -135 pounds since I was in my twenties. I didn’t keep that weight because I pigged out on all the wrong foods with no exercise. No, I pretty much cared for my health until about five years ago when living in a carnivorous world finally caught up to me. All the meat and potatoes could not be excreted quick enough with exercise, that’s for sure! But two years ago, with this diagnosis, I dove into research on natural treatments and possible cures for one of the deadliest diseases that in over one-hundred years has found no CURE! 

I found that a plant-based diet and supplementation could be the secret to healing and in two years, I’ve witnessed the success of MANY women going this route. No surgery, no chemo, no drugs, just the fruits of the earth to replenish their damaged body. I tried that route and was succeeding until last year when my world came crashing down. I realized I needed more than the food and supplements to get through this and it was the only reason I tried Oral Chemo.

What I was not expecting is finding a doctor I liked (finally) and being met with lies and fear tactics. The first doozy came in the way of telling me I should focus on the tumor/lesion on my brain. “OOPS, I must’ve been reading the wrong file, sorry.” There was no tumor, that was just a fear tactic to get me to jump into chemotherapy! Then there were the months he told me my markers were going down when in FACT they were rising! 

Assuming once again I’d jump into chemo, “Stop taking your meds, they’re not working!” 

I stopped taking my meds, I didn’t jump into chemo, then the disease started gnawing at my bones! I could FEEL it, chomping and weakening me. Doc says, “Now start taking your meds again until we get in here and get the poison in your veins to fight the battle.” 

All of the hard work I did at building up my strength in physical therapy was dwindling. I at one time was the champ of the place, meeting and exceeding my goals but just yesterday I came home and could hardly bend my knee. I climbed into bed and wrapped ice packs at different parts of my leg.

Last week I hit rock bottom. Feeling isolated and alone. Everyone seemingly has abandoned me except for my husband, son, my Physical Therapists and my loving Spiritual Online family. They are my anchors in getting me through this. Whether it’s through faith, religion, or just a positive presence, these people are the ones I’ll credit with any healing that takes place!  

I’ll be the first to admit, in all honesty, I even felt like God bailed on me. I’m just dangling on the end of this thread and it’s about to snap but luckily I’m grotesquely underweight that even a thread can hold me. Doubt and fear knocked on my door and like a fool, I let it walk right on in. 

I fear the chemo won’t work. I doubt that it is the cure all I seek. The doctor tells me of a lady who has been on Herceptin for TWENTY YEARS, and she’s still alive. And I’m supposed to find hope in that? I don’t! I will not be on this poison for one year let alone ten or twenty. That’s ridiculous! I’m concerned that the chemo, as I’ve read in all of my research, will destroy my immune system. For two years I have worked to build up my immune system! As I watch friends get sick month after month with a cold, flu, and any other illness, I’ve been the picture of health except for this one debilitating illness. I actually care about living and work my tail off to secure my strong immunity, now is chemo going to come in and destroy all I worked to build up? Am I going to lose MORE weight? How much can this tiny frail body take?

Again, feeling abandoned, I prayed. In the wee hours of the morning, for hours, I prayed. I woke to this message:

Prov. 13:12 (ESV) “Hope deferred makes the heart sick, but a desire fulfilled is a tree of life.” 

That is exactly what happened with all the talk about chemo. It brought in negativity that I didn’t know how to deal with. I’ve shunned negativity for so long when it beats me over the head, I think it’s personal and wants to fight. I think that’s the city girl in me, always ready to battle. Chemo knocked all my hope out the door. 

So what is my desire? To live! I don’t want to live until I’m ninety, but a good seventy-five - eighty would be nice. There’s my hope, right there! 

The realization of HAVING to go the chemo route is this. My diet and exercise can only save so much of me. I live within one-hundred yards of a substation, an element that cannot be removed from this healing equation. Move? Not an option, it’s Nebraska, substations are a part of life. Money would help too, then I could move. Then there are crop dusters, dropping poison on the crops to save the crop from bugs while damaging humans in the process. Such is life, I’m surrounded by fields and fields of crop dusters. I also have dealt with black mold for the ten years here. Then there is the chronic illness I’ve had all of my life and that is psoriasis. Sure supplementation has put it to sleep over the years but I do deal with flare-ups on occasion. 

I’ve been back on my plant-based diet for about three weeks now. I will continue exercising as long as my broken body and weakened limbs allow. I'll continue to meditate and pray. I’ll waltz down the organic route, the non-chemical use of body lotions and sprays, shampoos and soaps. I’ll pursue doing my part of the healing, God will do His part in protecting me, and my family will continue doing what they do, live in a toxic world right along with me.

I will wake every day and see hope in the hopeless. I will pound through these doubts and fears. Next week will come and instead of tears, I will hold hope instead of kleenex. A smile in place of a frown. Joy instead of sorrow.  I heard yesterday someone say that the simplest form of bravery is choosing to wake and take a step. How true is that?

May God bless you all in the steps that you choose to take.

Poetry Sunday: God's Healing Touch

Pss. 45:1 “My heart is inditing a good matter: I speak of the things which I have made touching the king: my tongue is the pen of a ready writer.”

Shimmering reflections of pain I feel 

Lost in fragments I needed to heal

A mending touch if truth be known

Is in His fingers pressing stone.

By chance, my aches towered then crashed

A mighty sword by flames were dashed

Slicing through with torments rage

Remnants bound in an open cage.

Not being confined by a limited view

My heart beheld all that was true

The night sky opened gems bedazzled

Made whole of me the frail and frazzled.

Armed with faith my body to restore

The strength therein the open door

No longer doomed by fate I’m driven

With all the tools that God has given.

I was blinded by mortal shame

And only had myself to blame 

Shaving off my arrogant pride

Unearthed the healing deep inside.

Once I freed confined vanity

Not veiled behind bent sanity

I relieved myself of the crutch

Bare I found God’s healing touch.

Job 37:23 “Touching the Almighty, we cannot find him out: he is excellent in power, and in judgment, and in plenty of justice: he will not afflict.”

Settling In...PTSD

1 Sam. 10:26  "And Saul also went home to Gibeah; and there went with him a band of men, whose hearts God had touched."

Settling in...PTSD

Settling into my home was not as easy a task as you’d imagine. Happy-go-lucky Joni was a shell of a being. The nurses had noticed in the hospital and nursing home, and they didn’t even know me, the physical therapists saw it, and my family just assumed I was sad. No, the trauma I had experienced was a little more than depression or sadness, it had all the earmarks of PTSD.

Post Traumatic Stress Disorder is not a light analogy of depression or sadness, it is a severe trauma that is triggered ever so lightly by sounds, pictures, faces, or names. It is a fear so intense that not even the Light of God Himself standing beside you can wash away, it is THAT severe. People who don’t have PTSD will never comprehend the magnitude of pain a person suffers through.

Last year is almost a complete blank to me, except for the trauma. Have you ever opened an MS page and saw a blank screen staring you straight in the eye and you felt a trembling panic for a few seconds not knowing what you were there to write? Every morning I open my eyes a blank page lay before me; what I put on that page shapes my day physically, mentally, emotionally and spiritually. What people say or do become triggers like a bullet waiting to be tapped and released from the barrel, words can shoot a person down. Without even knowing the triggers, friends, and family set off a ticking time bomb inside the psyche of a person suffering from PTSD. Anger, fear, frustration, guilt, and shame all become an open floodgate in the way of tears streaming down my face at any given time. At home, the doctor's office, the physical therapist office, or even in the food store, tears unleash without warning.

When my home health nurse noticed my PTSD along with my physical therapist, I was put in touch right away with a counselor. While I liked Dee, she was more about telling me her story than hearing mine. It was fine because that is the kind of front I put up, I’ll help you, you can’t help me; it’s an unbreakable barrier. I basically thanked her for listening and sent her on her way as I cringed inside. I was broken.

I could see the pieces of myself scattered on the floor. I wanted ever so much to take a whisk broom and scoop the particles onto a dustpan and toss them in the trash but I was immobile, disabled. There was no scooping going on any time soon. I would sit in the silence of the house, meditate in the quiet of aloneness, and pray to the only God I know and worship. Only He could get me through this, in time. HIS TIME, not my time. Here we go again.

Settling into my new surroundings would have me fearful of nightfall. Sounds would ricochet off the walls while shadows would pirouette. You would think that home was familiar surroundings but to me, I felt as if I was an orphan dumped off to this house with a family I didn’t recognize.

As the fragments of my life lie on the floor, images of last year shine like a mirror swaying in the sun, blinding me as I see good and bad portions flailing about. This trauma was not a phase I was going to laugh my way out of as if nothing bothers me. Each step I take would be like tiptoeing in a minefield, a trigger to tears or to laughter, to pain or to joy. I don’t have a choice in the matter, I just tread lightly and make every day a new day, every step a step toward healing.

God's time is not my time as I stroll along the healing path. I’ll endure the steps I needed to take to get me to the healing sea where I will eventually take a luxury dip and swim like a fish in open waters. Right now I’m still in an saltwater aquarium awaiting release in the open sea. God tells me ‘patience’, ‘faith’, and most of all ‘TRUST’, and in Him is where I’ll find my healing. The Joni I remember is still there in the windowed world… it's just going to take some patience, faith, and trust to find her again.

Lam.3:23 "They are new every morning: great is thy faithfulness."

Home At Last...My Story Continues

Rev. 19:1 “ And after these things I heard a great voice of much people in heaven, saying, Alleluia; Salvation, and glory, and honour, and power, unto the Lord our God:”

Home at last...

Driving home for the first time in twenty days felt strange as I had not really been in the outside air except for the three-minute drive from nursing home to the hospital across the road. I opened the window and let the cool breeze kiss my face as the sun hugged me, welcoming me. Yes, there was sun instead of clouds on this day of my release from rehab.

I was a little nervous heading home because I had no idea what uncertainty was going to meet me at the door. All I knew was that it was home, and I was finally going there, a safe haven in which to rest. What felt like months in the hospital being shuffled from hospital to nursing home, to radiation on my leg, to the primary doctor and back to the hospital, it was all coming to a nerve-wracking end because I’d have to trust my husband on a different level more than anything right now.

My husband had been put through the wringer, thrown in the dryer and left there to wrinkle. In other words, this man was frazzled beyond recognition. I could see him in there but his mind, it looked as if it had been thrown in the frying pan and left to sizzle. No one noticed this, not his mother, his sister, no one but me and my son because we had to deal with him daily.  He was forgetful, distant at times, and extremely self-centered. He was trying to regain control of the world he lost,  something that looked normal but he knew, that time was a ways off in the months that lie ahead.

In the twenty days I was in the hospital he had locked his keys in the car at least three times, he had forgotten what I asked for from home almost daily and he had slept on the hard hospital sofa for ten days, not wanting to leave me alone in the hospital but was made to leave me in a nursing home and that laid guilt on him. I’m not telling you this so you can laugh and make fun, I’m sharing this because here was a dedicated-to-his-wife man, who had very recently put his dog to rest, now made to deal with his wife, not being the beautiful dependable homemaker that he fell in love with. He was wearing thin on many levels and it hurt me to watch.

Now he was driving me home where my care would be solely left up to him. Sure, a home healthcare nurse would come by twice a week, but as you know, there are seven days in a week. I  believe any man would be anxious in this situation where twenty days ago he didn’t know if his wife was going to live or die, it looked that grim from their perspectives. Sure his mom would offer to make a meal or two, but he needed more, more that none of us could give.

Now sitting in front of the house drew tears from my eyes like water from a well. I was no longer looking out a window hoping and praying, I was home, prayers answered. The tears flowed effortlessly before I even tried getting out of the car. Hubby was removing the wheelchair from the trunk, my son came from inside offering to help and I just wanted to sit there in the car and drink the reality of it all in. “Why not unload the car and let me sit here a few minutes?”

They complied and began carrying in vases and stuffed animals, blankets and clothes, boxes and bows. I was home. The shabby little rental house isn’t all that much to look at, but it has been my home for ten years, one where I made it a flower-rimmed home that even the owner of the property had mentioned how well tended this place was. Amazing what love can turn into beauty in the midst of ugly. I was home.

I called out to Riley, the dog who wandered onto the property two years ago as a stray and never left. Riley, who was nowhere to be seen, nor had been for some days the guys said. I called out and told her to come home, I’m here. She would come eventually, she always does. The guys said that when they put food out for her, it disappeared, but they never really caught a glimpse of her. 

I had to swing my pained legs out the door. I would need to get back into the car on Friday and all the days of doctor visits, so this has to go well! I pivoted to the wheelchair, gently sat, and after taking a deep inhale was pushed forward up my RAMP, that my bro-in-law built with no questions asked (or funds for that matter!)

Once safely in the front door, my eyes opened to a cascade of tears, I just sat and bawled my eyes out, crying, “I’m home! I’m home!” There was joy and fear, anxiety and pain but there was also my Lord waiting to carry any burden I brought home with me. 

I’ll continue this story in the coming weeks as I continue healing but today being New Year's Eve, you need to know how far I’ve come and am at on this day, two short months since I was released from what I deemed ‘the hellholes’!

My cancer markers have gone down drastically, leaving the doctors scratching their heads in amazement. The markers began in September at 2775, dropped in October to 1500, then to 875 in November! What do they mean? Cancer no longer likes living in my body- for now, I move on.

When I was released from rehab on October 5th, I was on a strict no weight-bearing regimen! I could not put any weight on my left leg and minimal on my right! 
Today, I still use the wheelchair but I walk with a walker (in the house and at physical therapy) and have just started practicing with a cane! 

My doctors, plural, have admitted that it was not just the oral-chemo that has had this miraculous change in my healing. Whatever I was doing (alternatively) was obviously in play here and working on healing me! 

The radiation I received for ten days was to my femur where they said cancer had spread, radiation zapped it away. More astonishing to the doc’s was the rare way my body was handling everything. No vomiting, eating regularly, no diarrhea, no pink peeling skin, no mouth sores, no fevers, etc. I was what the nurse said, “Our poster child for what stage 4 cancer healing SHOULD look like!" Words like awesome, amazing, fascinating were frequently heard with each office visit or from anyone I came in contact with really.

This weekend for the first time in three months, I reclaimed my home! Taking my time and being ever so cautious, I dusted and vacuumed, washed, dried, folded and put away two loads of laundry. I’m releasing my husband of those duties and hopefully, he can find healing also. 

What do I say is my source of healing? My God! Simply put, my AMAZING GOD! Prayer and the support of my friends and family. I never allowed my faith to wane, my trust in the Lord grew stronger. Through each pain, every sorrowful step that brought tears to my eyes, I cried out louder to my God, Thank you, Jesus! 

Now, what do I see for the NEW YEAR? My faith growing even stronger, my sharing of this miraculous healing with any and all, and I see the colors of the rainbow flourishing in my garden this spring. I see me walking around the house talking to my animals and giving my Riley plenty of belly rubs! Yes, she appeared when she sensed I was home. (It didn’t take too long)

I’m home… home at last! 

HAPPY NEW YEAR, my Spiritual Family! I could’ve never made it without your continued prayers and support!

Pss. 30:2 “O LORD my God, I cried unto thee, and thou hast healed me.”

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.”

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)

ER 4: One Traumatic Event

Job 14:22 “But his flesh upon him shall have pain, and his soul within him shall mourn.”

ER 4 - The Traumatic Event

I was doing everything I was supposed to be doing. Taking care of myself, visiting the doctors I was supposed to and life was moving along. I had a stool in my shower so I could safely shower, I now had a bedside commode because the journey into the bathroom alone was too risky as well as painful, I had the walker and cane and everything seemed to be moving along fine. 

The orthopod, Dr. Wrong, had told me that surgery would more than likely mean a total hip replacement, after looking at more x-rays that the office did and that work on my right side would be risky since it was covered in cancer, the ugly cells that spread like wildfire through my bones. I told him I was on oral chemo and he arrogantly said that he offered nothing oral here and thanks for coming. I did not hit it off with this ortho and quickly made an appointment with another, Dr. No.

The second ortho’s opinion differed from the first one and mixed signals were rampant in my head. I realized that all the little stuff the doctors and nurses put into the computers they carry apparently is for their eyes only. Your information is not shared with the medical community (the doctors you’re seeing) as it should be so that everyone is on the same page. Mass confusion ensues.

My shower that day would be the last for three months. I felt a twinge in my left thigh and I just figured I hit a nerve trying to get out of the shower from my awkward shower-stool. My physical therapist had surmised that my sciatic nerve was damaged, but the ‘know-it-all-doctors’ and their x-rays said it was my disease, munching on my bones like a beaver!

The rest of the day went off without a hitch and both my husband and son were home able-bodied and assisting. My bed was the most comfortable spot to rest my weary bones so there I went, to relax for a bit. 

After dinner, I needed to pee and the commode being inches from me seemed like an easy task but as soon as I put any weight on my left leg, pain shot through my leg like a bolt of lightning singing its target. I screamed. My husband came running. I think that was the last time I saw the sound, stable mind of my calm man. Fear gripped his face like a Hannibal Lecter mask. It covered every portion of visible skin. He was now someone else.

I squirmed and writhed. The pain was intensifying as was the need to pee. I just wanted to pee in the bed but knowing I was on TOXIC CHEMO, I would’ve destroyed the new mattress. My bodily fluids were now a danger to anyone who came in contact with them, so precaution was needed. Twenty-four inches is not a lot of room for two people to maneuver someone to a commode but maneuver we tried, I made it to a seating position on the commode and I screamed like a woman in childbirth, my thigh had dropped. It was gone, disfigured and dangling, a portion of my thigh just hung there as my knee no longer was where my knee should be. Between my legs is not where a knee should be. Something was seriously wrong.

My husband looked at my leg and just short of vomiting, he said, I’m calling 911. “NOOOOOOOOOOOOOOOOO!” I screamed, in pain and a not-this-again yelp.

Yes...911 had to get me out of this literal twenty-four-inch hellhole.

I want to give all of the gory and painstaking details of the next hours after this point but as harsh as it is to read, it is even harder to write. Just know, this event was the one where I found the true living meaning of gnawing and gnashing of teeth. The pain was more intense than childbirth. Considering I’ve given birth three times (two natural) you will not read this and say 'no way'. Intense, piercing pain went on for days even with the strongest of drugs they offered.

Miracles were taking place and prayer was right there in the ER with me as the nurse held my hand and we said the Our Father as an x-ray machine was brought into the tiny cubicle to get a picture of this mangled mess before them. Their faces spoke volumes. They have seen the worst of the worst in this hospital and looking at my leg, their faces drained of blood. 

I, in my natural fashion, kept the atmosphere as light as possible and made lil jokes and comebacks as they asked for the umpteenth time my birthday and the one nurse even remarked calling me a little spitfire! The Lord did not take away my humor. In the depths of darkest pain, I cried out to Him and He kept intact what makes me special, my personality.

I was wheeled to a room, obviously going to be kept for a while and with each bump in the floor, I screamed in pain, the ER nurse held my hand through it all and even went to my room with me. She made some calls that night that went against the doctors' orders but honestly, I trusted her as I had yet to even SEE a doctor. Not calls that would put me in danger, calls that would help me, like a catheter and stronger pain medication. It was obvious to her I would not be using a bedpan for days and bless her heart for making that call!

They had to shift me from the ER bed to the bed in the room, and though I’m light, my leg was so mangled and twisted it took about six people to lift, shift, slide my body to the new bed. Tears and screams flooded the room and each nurse again, stood looking as pale as if they had just seen their dead relative walk in the room. They knew and understood the damage present.

An Asian doctor (Ming, not real name) came in and introduced himself. He looked at the nurses and knew my case was serious, the color had not returned to their faces. He informed me that my Orthopod was trying to make a call on my situation without even seeing me, ‘keep me in traction until he can get in to do the surgery on Monday.’ Dr. Ming took one look at my mangled leg and said ‘No! I call dr. here on duty. You need surgery on this leg.’ I and my husband gave him permission to do what needed to be done. 

A miracle walked in the door in the way of Dr. Slim, who was a fill-in for the original Dr. Wrong Orthopod I had seen and didn’t get along with, this doctor was here for a week doing his rounds. Tall, slender and handsome, the concern darkened his raised eyebrow. His lips were perched tightly shut as he knew he had to make a split decision. After looking at this disfigured leg in front of him, he made his call, we need to operate. The doctor overrode the ‘keep her in traction’ orthopod’s decision! Thank you, Jesus!

Now to get the sleeve that the paramedic had placed on my leg at home, to keep the leg from moving, off of my leg. Yeah, all that pain I had felt was with a protective sleeve on my leg, I did not want it removed but the doctor told me my leg would set that way and it would become almost impossible to fix.

The original ER nurse was still there, holding my hand and squeezing it tightly. They all knew about my stage 4 disease and that I was on oral chemo and practically a danger to society since I was now a toxic minefield. They didn’t care, I was the patient and their first priority. Those women became MY heroes!

Dr. Slim stood patiently with my heel in his hand, as the women went on, to slowly free the sleeve, gently and cautiously sliding it under my leg, and in between screams and clenching my teeth, and darned near breaking the poor woman’s hand, the sleeve was removed. Now, to get me to straighten the distorted injured leg.

It was now the middle of the night and yes, after holding my leg/heel for an hour, Dr. Slim did eventually get me to straighten my leg but I’ll spare you more tears and screams, the thesaurus doesn’t hold enough words to describe the angst I went through that morning.

The operation was early that morning and my husband and son were there with me before I went in. My mother-in-law postponed a trip she was going on that day but she wanted to be there for us all and waited with them for the hours the surgery took. I woke, still in pain, but not the same pain as the night before. Now it was time for healing and keeping infection away. The next ten days would be a journey of a thousand hours. Pain-filled, buckets of tears, but love and miracles abounded! My God is an AWESOME God! 

...story to be continued

Rev. 21:4 “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”