Friday, May 10, 2019

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!



4 comments:

benning said...

Oh, Sweetie, I'm sorry! :(

How many alternatives have they discussed with you? Herceeptin sounds like a big mistake. >:( Delayed massive pain? Good lord! :O

*HUGS!* <3 We just wantcha to HEAL! Get better! FEEL better! Dangit.

Prayers, of course, continue! <3

joni said...

Thanks, Ben!

Nothing alternative! I had one picked out but they shooed it away. I don't what to think anymore, what to eat, what to do, or who to trust.

All I want to do is heal too, and I felt I WAS until the first dose of Herceptin! It all took a nosedive since, plummeting quickly.

I DO have a good day here and there and I see the old me and I cling to her like a wet towel. I cling and hold tight!

I'm going to try Essiac tea from JustT. It's expensive for such little but with a gracious donor, I'll make it work!

I'm still on a no sugar, no meat, and rarely dairy protocol. I haven't checked my weight but that has been the only positive. My weight has been the same for nine-months! We'll find out next week. :/

Thank you for your unending, continued support!!!! <3

Love and prayers back atcha, buddy! <3

Leona~Author said...

Jonni, I'm just heartsick at the struggles and pain you're dealing with. Who knows the mind of our God and his plans, but it seems to me you've been tried by enough fire to be pretty well-refined by now. I realize that all I or anybody can offer you are words of encouragement which don't help alleviate pain. Barb and I both pray for you often.

Maybe a good laugh might help.

I'm sitting up in my hospital bed at 1 am watching mice run out from under my desk and jump at what they think is their hole in my wall that I had Barb cover. So, they smack into the wall and drop down slightly stunned, and then STAGGER TOWARD MY BED. I have to rattle the bed to make them run back.

We are surrounded by fast food places that attract mice in droves. They got a toe-hold on our house ...they shun the traps we've set. We are probably going to get a cat as a last resort. My dog, Luna, has caught quite a few. Pray we succeed.

Goodnight and God bless.

Love, Leo

joni said...

Thank you, Leo,

I'm telling you, I thought the femur break was it for me but He had other plans. Try the chemo He said, I listened. If it was not for the image of Jesus carrying the cross, if it was not for Him begging God to relieve this pain, I'd be a bigger mess than I am. I hold tight to those images. I'm a lot lower than Christ and HE did it.

As for the mouse! Oh my, what a chuckle. I have two neighbors who I consider messy neighbors (hoarders) and me the clean neighbor. I have snobby Country Mice! They like MY place! LOL

Try a water bowl low enough for them to get in but high enough they can't get out! I went outside to fill my dogs' water bowl (I'm careful, it's on the top step) and I've found, so far, two drowned mice!!! LOL Oh, could we tell some stories!

I think the movie Mouse Hunt is perfect. Just give the mice what they want. Killing them is useless!!!

Thanks for the smile!

Love ya, Leo!