Reality Can Bite

Every time, every.danged.time.  I think I've got this thing conquered and it isn't going to lay me flat for a sold week, it looks at me and roars back.

I am not going to lie.....this is tough.  And, I'm tired today.  I'm tired of not being able to walk and do things for myself.  I'm tired of sitting and feeling helpless, which often leads to hopeless.

I want this to be easier...for me....for everyone.  But it will not relent.  It is determined to show me who is the BIG BOSS and I'm fighting to show it a BIGGER one.  

I thought the delayed reactions were a harginger of better days to come but no.....they have only made the days much harder and way more severe.  My knees are just absolutely on fire with pain today and I can't get on top of them.

This is like the song my Granddaughter used to sing "We're going on a bear hunt"  Can't go over it, can't go under it, can't go around it....have to go through it.  And, today I feel so sorry for everyone who has to deal with this on this level.  It is hard and exhausting and mind numbing.....in short it is a hell on earth and there is no use in sugar coating it.

I know God is holding me because I'm still here and still fighting but this day is hard and I am desperately praying that tomorrow is easier because my weak human nature feels pretty danged defeated today.  And, I honestly think I'm allowed that.  I also know that without God I would not still be even remotely functional and I am so very grateful for His Divine intervention.....and I am praying He touches me with a healing touch soon so that I can jerk myself out of this mire of self-pity and do something more uplifting for me and for all of you.

The tunnel is dark today but I still see a sliver of light....maybe tomorrow it will grow bigger and brighter and show me there IS a forward path.  I pray for it.  Sorry to be a Dafne Downer today, it's just all I can manage right now.  Love you all and thanks for the prayers and all support you provide!

"Trust in the Lord with all your heart and lean not on your own understand; in all your ways submit to him, and he will make your paths straight." - Proverbs 3:5-6

 

Delays, Detours and Sidetrips

Perhaps I was overly optimistic.  Or, simply spoke too soon.  Or maybe, these small delays will eventually work themselves around into being non-issues in the future.

But, the neuropathy and joint pain reared their nasty little heads yesterday and are still proving to be a giant pain in the posterior for me today.  The good news is.....they are neither as severe as they have been in the past.  Painful, annoying, infuriating, but NOT unmanageable.  I am so grateful for this!  However, they are problematic enough to keep me from putting all lives at risk by driving in my car, which means I'm not working today....once again I HAVE TO BE OKAY WITH THIS!

Soooooo. as far as I can be I am couch productive today.  I am trying to get my mid-chemo scan scheduled and I've had a great restorative telephone call with a sweet friend who I truly love - thanks Debbie for reaching out!

Yesterday I got to see Audrey and her Logan.  Logan came and mowed, did the weed eating, picked up sticks and made everything pretty in the yard.  Audrey did floors for me and hung out and kept me company.  And my friend, Theresa came over and hung out for a while and we always have great visits that make me laugh.

Right now I would like to address great areas of gratitude....to people who reach out, come by, make themselves available, bring food, offer encouragement and prayers.  Those are no small things!  To the people who make it easy for me to get my dogs taken care of, pick up prescriptions, haul me to appointments, sometimes just hold my hand and listen to me vent frustrations.....huge thanks.  And those prayers.....I feel them, I really really do.  Sometimes I run out of those for myself and yours are all felt and needed!

Also, to all of you who have been so kind and generous in contributing money towards my benefit....my goodness!  There are no words adequate to express how deeply these have touched me....I feel I have been so richly blessed in the people who have helped in this manner....not once but twice.  I also feel so terribly unworthy, but so very very grateful.  To those who started Gofundmes in our/my behalf and everyone who has donated, please know that I pray those come back to you a thousand fold.  Speaking from experience, it is so much easier being the giver than the taker in these situations, but I am humbled that God is giving me the opportunity to be the recipient of so much of His and your goodness and graciousness to me.

My vow is that every kindness will be paid forward to whatever degree I am able at the end of this journey.

I continue to ask for prayers for those people I mentioned in earlier posts and hope if you know someone who also could use collective prayer, you make me aware of them so I can ask it here.

Remember delays are simply that....putting off till tomorrow what you simply can't do today.  Detours often are better roads to travel.  And those sidetrips may be lots more fun than the trip you intended to take.

Today's funny....I have to cut a huge mat out of Ozzie's mustache today which means he's going to look funny, but be a lot more comfortable.  I probably won't humiliate him with a photo....but then again maybe I will.  Maybe it will be Ozzie with a slightly off kilter facial trim and me with my little old men on the Muppets hair.  Who knows.....all things are possbile here in the land of "this is not usual

“Shout to the Lord, all the earth; break out in praise and sing for joy!” - Psalm 98:4

Love and light from the Chemo Train....chugging down the track to whatever comes next.

-Lavetta

 

Day 3 - Knowledge is Power

So, this is day 3.  I count Treatment Day as Day 1 - these are on Thursdays.  Friday is Day 2, and Saturday is Day 3 (which has typically been my Kryptonite.)  My greatest desire and prayer has been to get this day (neuropathy day) under control.

After spending a great deal of time with my oncology nurse regarding the pros/cons and purposes of all these cancer/chemo meds I found there was one that I neglected to take after my 2nd round of chemo.  It is a follow-up steroid that I wasn't clear I had to take each time.

But apparently it definitely made a difference coupled with gabapentin which I have been taking religiously before bed each night.  It helps me sleep also and keeps the nerves calmed a little.

Today I am wearing my compression socks, with neuropathy socks over them.  The neuropathy socks help quite a lot as they apply additional pressure to the feet and ankles.  And, I am being good to myself and staying off my feet as much as the fur children will allow.

I am so very grateful that this day didn't dawn with me in screaming pain.  My joints aren't even hollering at me today so THIS IS A GOOD DAY.  It won't be a productive day, but perhaps if I can get the weekend managed well, I can actually work some next week.  That would be what winning looks like these days.

I have had Kathy (with a K or C? - God knows) on my mind a lot.  She had her first treatment the same day I had Round 3.  I am praying she is having an easy time of it!  And I hope she has knowledge and power to learn through the process.

Challenges abound.....new ones pop up seemingly out of nowhere all the time.  I can't fix what I don't control.  All I can do is pray for those challenges to right themselves as God designs.  I am living in a Faith space, believing.  I can do no less.  I am not in charge, I am not driving....I can only do my part by holding on and staying out of God's way.

And I see blessings every day.  In the people who love me who make time to show me and tell me.  The little and GREAT BIG things that are done in my behalf.  You know who you are and my gratitude is endless and I plan to pay every kindness forward as I am able.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” - Joshua 1:9
 

Love and Light from the tunnel once known as despair.  Today, it is the Tunnel of Hope!

-Lavetta

Todays funny:  Sawyer had a dirty heinie.  He got tossed in the shower and had a sani-bath.  Now he is mad and not speaking to me.  He punished me by drying himself off on every floor rug in the house.  Now everything smells like wet dog washed in Goat Milk Soap (courtesy of Shepherd's Farm).

Don't forget to pray for these people today:  Debbie F, Shane and Debbie F, Kathy (with a K or C? - God knows) and our family's Brian , Nick and Austin....and all the people in all the oncology centers walking this strange and terrifying road on the daily.  Cheers to those who win!  Cheers to those who fight on!

Round 3 - This Is No Longer My First Rodeo

See all those empty super comfy recliners?  From the jump it has been said that those can be used by "support people" unless they are needed by by patients.  That's understandable.  But yesterday, my daughter sat down in the one directly in front of me and was told "we are actually going to be very busy today so we've put a chair in the corner there for you."  Well those hard chairs are pretty uncomfortable to sit in for 6 hours.  Turns out there were always empty recliners all day long.  I'm pretty undone over this because patients need their support people to be taken care of too.  This will be addressed next time and if I'd been all the way listening it wouldn't have happened this time either.

Some things are worth fighting for.  On another note, yesterday was the maiden voyage for the new port.  This was a good decision and one I am grateful my daughter pushed for initially and other people chimed in along the way.  It was nice to have free range of motion in my hands and arms for the duration of this treatment.  Also, it is a take things out of or put things in option so blood draws can happen through this as well.  My veins will be happy and if they are happy I am happy too.

 I took a list of the cancer/chemo meds I was given at round 1 and asked for further clarification of what they were for specifically.  I am one of those people who cannot be inundated with information that makes absolutely no sense to me whatsoever.  All this information was given at round 1, but I was literally scared out of my mind and no matter that there were handouts and visual aids and notes taken (thanks Paula), I needed to go through a certain amount of time and experiences for any of these to make sense to me.  And I needed to have those reactions to my treatment to be smart enough to ask "will this one help with that?"  I did find out that I totally skipped an after treatment steroid in round 2 that might have really helped me.  Not making that mistake twice I assure you.

Kaylee and I stayed in the Cancer Support House again and that is a great resource since we can drive up the night before with late check in and not have to get up early and drive through the "going to work traffic" all the way up the mountain and worry about delays or accidents putting us late getting to appointments.  The Support House is lovely but Kaylee and I agree..........cancer patients need a better grade of toilet paper!  I will be making that suggestion....lol.  Not that I think they'll listen.  I do realize it is about cost but honestly I don't see the savings because that cheap toilet paper just results in using more of it than should be necessary.

Treatment went well after I got over the fact that someone was already sitting in my preferred spot....I'm not "Baby" - I'm okay with being in the corner!  It affords me the ability to spread out a little and not feel in the way.  Can you reserve a specific chair, I wonder?  Just kidding!  I'm not THAT big of PITA.

At my second treatment I met a very pretty lady who inquired where I was in my journey.  We had just starting talking and they called me for labs so that got cut short, but she was there yesterday for her first treatment.  Her name is Kathy (K or C) I'm not sure, but please add her to your prayers.  She is so very pretty and has beautiful salt and pepper hair and a happy friendly up beat personality.  I gave her the link to my blog and I hope she utilizes it and gets her own answers to some things she might not already feel she's sure about.  She has a very nice husband, so pray for him as well...because whatever she walks through he is going to walk through as well.  Support people so often get forgotten and they shouldn't.  None of us can do this alone and we need those that step up and in to have all the resources they need as well.

I've had lovely surprises this past week.  I had a cash gift that was a true gift of love from someone I don't know well but she knows me because I used to work for her mom back when I am quite sure I wasn't a great employee.  Teen-agers often aren't.  Anyway, it touched my heart and I will pay it forward for sure.  I had another fantastic friend who started a Gofundme because my work attendance has not been great since this all started and that was a big and wonderful surprise which will also be paid forward when I get on the other side of this Rodeo.  His beautiful wife (a cancer survivor) packed up the most wonderful meals and sent them to the house along with a giant slice of the most fantastic chocolate cake I have ever eaten.  More cake please!!!  I've had messages of love and support from so many people and these feed my spirit.  My support people have been wonderful and patient with me.  It's hard to lean on people when you haven't really had to do much of that, but I am becoming more relaxed in that and that is a great help to me mentally.  And all the people out there that are praying for me.  My goodness, what a gift to know that people who know you and some who don't speak your name in prayer!

I also got "hooked up" with the Support House here locally for meals to have on hand for treatment weeks.  Rick got those picked up yesterday so I should at least have easy things to fix during those typically difficult days 3-4 and 5 times.  Staying fed has been challenging during those times as I simply haven't had the feet and legs to stand in the kitchen and cook.  If I do, I'm usually over it and won't eat it.  Learning to simplify is a good thing.  I've also had to learn to utilize every single resource that is out there for cancer patients and they aren't insignificant either.  If you are walking this journey and no one has mentioned these, ask.  There are gas cards available for travel if you live a distance away...these might be part of a discretionary spending account you have available to you.  If travel isn't an issue, that spending account can be used to pay a bill you might be having trouble paying.  There are free wigs available and head wraps, scarves, hats.  Ask, ask, ask.  And don't be ashamed!  You can pay this back in the future by voluteering for things.

My work, my boss and my fabulous co-workers.  My being absent works a hardship on a lot of people.  I know this because when they aren't there and I am.... it is A LOT.  I am so grateful for the understaning I receive from FedEx Freight.

The people who board my furry children have absolutely been fantastic to me.  Odd hours of dropping off and picking them up which I know work havoc with a "schedule" - but they just roll with it.  And their compassion to me does not go unnoticed.  And my kids like it there and have come to know that if I say "let's go riding...." they are going to PAWSI to play with friends."  Well, Sawyer plays.....Ozzie observes from a distance and makes his displeasure at shenanigans well documented.

Most importantly, God draws ever nearer to me, I feel Him working.  I feel it in the way I handle difficult things, in my patience with other people, in my peace of mind knowing that even if I am here alone most of the time, I really am not.  He is walking with me, holding my hand and through Him I feel my husband's presence.  Encouraging me, loving me and telling me, "it's going to be okay....we've got this!"  I know he means God and him.  And with them, I am going to be okay.  "I know the Lord is always with me.  I will not be shaken, for He is right beside me." - Psalm 16:8

Today please join with me in praying for Debbie F and her family (aka support group), Shane and Debbie F and those who stand in support for them.  And for Kathy (with a K or C- God knows) and her husband and the others that might be supporting them....they are at the beginning and I have no idea how far she has to go....but I know that walk will be her walk, none of them are the same.  Oh, and pray for Brian a special young man in our family.  He's been fighting a very long time...he is a veteran and right now is not doing all that well.

And celebrate with me that I have reached a half/way mark in my chemo treatments....yesterday was the hump-day for chemo....I didn't get to ring a bell, but I silently pressed a confetti cannon button and visualized colorful bits of paper flying all over the room.

Love and light from half-way through the tunnel.  I see a sliver of light!

-Lavetta

Calm Before the Storm

 "a period of unusual tranquility or stability that seems to presage difficult times."

This quiet time can bring a sense of peace, yet it can also bring a mixture of feelings of panic as we brace for what's to come.

Right now I am in such a place.  I am feeling pretty well, albeit tired.  And, I'm also trying to get my ducks in a row, questions to ask, suggestions for what might work better this time around.  Medications to catalog and find out what they do and when I should lean on them to do their job.  This chemo stuff is ever evolving and changing but I find it also has a lot of the same little potholes each time.  Those are the things I would really like to impact on the most.  I would so like for those challenges to become more manageable and easier to navigate.

My weekend was very quiet and it's a good thing because I spent two whole days feeling like I'd worked outside in the heat when all I HAD done was hold down the couch and try to figure out where I left off in a movie when I dropped off to sleep.....again.

I will go to work today.....my finances need me to stay productive on days I can actually manage that.  And honestly, I am glad of the distraction.  I hope to work the first 3 days of this week because Thursday will usher in what I fully expect to be another week of not being able to do a whole lot.  Maybe this time will be better....I surely hope so.  I'd like to get through the half way point of chemo feeling like I was getting more adept at managing this.

I have had such nice things happen in the past few days.  Delicious deliveries of food, a little unexpected influx of cash....and messages of hope and encouragement (I now have a magic wand....be afraid....be very afraid!)  I am so very blessed in my family and in my friends....I hope they know it is their support that keeps me chugging forward.

I am now equipped with a "port" for ease in infusions.  Rick refers to it as a "fuel door"....but Kaylee deemed me a Cyborg.  I am truly hopeful this helps everyone concerned in my treatment process.  I know my veins will likely breathe a big sigh of relief.....no more blow outs or leaking chemo will be a big plus.

Not much will be reported this week as I get ready for Round 3 but for sure there will be things to say after treatment on Thursday.  My last name is Beshears.....we all know that if something can go sideways, funny or wrong....it will happen to us.  We are ever watchful and ever prepared and we usually find a way to make it funny.

Love and light from the journey!

-Lavetta

The Ultimate Surge Protector

This looks like a good surge protector....no?  I've found one better.  I will explain.

This morning I had a 5:00 am check in to have a medi-port installed to simplify my treatments and spare my beleaguered veins.  Kaylee and I wisely drove up last night and spent the night in the Cancer Support House (provided by the fine people at J B Hunt) so we could be on time and spare ourselves the early morning drive.

This was said to be a 30 min procedure....in and out....done.  We thought we might be home by lunch.

But.....

No

After 2 hours of pre-surgery questions, etc. and the placement of still yet ANOTHER IV.....lights flickered, alarms sounded and then we waited.  After quite some time a nurse poked her head in and said "has anyone spoken to you about the power surge?"  Well, yes, they had but not to a degree that gave us details.  She went on to explain they had blown a transformer and were waiting for Swepco to arrive, but there was a possibility they might be sending all their non-emergency surgery patients home.

I had my own power surge at this point.  Scheduling this stuff is hard.  Jobs to work around...drivers to be secured...lodging to be obtained....dogs to be boarded.  Emotional well-being to be prioritized.  I surged.....and then I stopped.

I slowly and deliberately counted to 10 and then I said to myself "God, you know this needs to happen and it needs to happen today....I'm trusting you to work this out for all of us...not just me.  Everyone who needs help today."  And then, I fell asleep.

When I woke up, my daughter was sitting in the room and she said "I think we have a green light!"  And within 30 minutes I was rolling down the hall to a chemically induced nap.

The next thing I knew I was waking up, sore and tender with what my bonus son Rick called a fuel door.  And shortly after some water (finally) and a few graham crackers Kaylee and I slowly rolled down the mountain in a mobile parking lot to home.

So, feeling a surge of not so healthy energy....try God.  Need to get safely home in bumper to bumper backed up traffic on a treacherous stretch of highway....try God.  Believing all things will work out exactly as they need to....trust God.  And try coming to him from a place of quiet acceptance and peace, instead of angry panic and frustration.  I fully believe God hears tiny whispers much better than big voices.  After all, His ear inclines toward the sparrows....perhaps He enjoys those moments of quiet trust because He knows we are showing Him our faith in His dominion over all things.

Today was a long day but it was a good day and the port is ready and waiting to be used next Thursday.

Things that made me laugh this trip:  The man in the restaurant last night who spent a very long time picking certain things out of his salad and tossing them on the table.  He was still at it when his dinner arrived and when asked if he wanted fresh parmesan, had the server grate so much cheese onto his dish that it was in a mound and she probably had to ice her arm before work today.  And, after the cheese grating he went back to picking apart his salad.  At the time we left, he had yet to take a bite of one thing on his table.  The other thing was spotting myself in the mirror this morning and saying to Kaylee "say my name three times!"

Because..........

Beetlejuice, Beetlejuice, Beetlejuice!

If you know you know!

 

Ports Of All Kinds

 Lots of kinds of "ports" but unfortunately for me, not the kind pictured to the left.  No cruise ships, no exotic locations, no fabulous food or cocktails festooned with colorful umbrellas.

I've found the word "port" in all kinds of places lately....rePORT, supPORT, and just good old fashioned Port (wine that is).

However, port for me means that Thursday I will getting one installed in my body to save me, my veins and my care team a lot of frustration and worry.  I know this is the right thing to do because the last 2 months have proven to me that I have to make this as easy as I can for everyone concerned.

A 5:00 am arrival in Fayetteville doesn't sound so thrilling so my driver and I will utilize the supPORT House to get a good nights sleep and then slide across the street for the procedure and hopefully back home.  This gives me a week before said port gets utilized for round 3 (which puts me 1/2 way finished with this portion of my treatment.

Not much to rePORT today....I haven't felt great this past weekend, but I think it is allergies that are rearing their ugly little heads.

Love and Light from me to you. - Lavetta

Running Backwards

 Sometimes when working with a semi-wild, untamed, unmanageable thing means you are trying to stand your ground while it runs backwards.  You are tethered to it with a thin strap of leather and it is going away from you as fast as it can.  You can try to out-horse the horse but that will result in that instinct it has to lose you by any means possible.  Your choice sometimes is going with it as far as it can go until it realizes you simply WILL NOT stop trying to tame it.

I am finding that my chemo treatments are like this.  They keep finding new ways to prove to me that they are the master of my destiny.  I'm stubborn....I just keep running at them with God holding my hand and saying....NO....you do not get to win this.

This is hard.  Being without my earthly hand-holder is the hardest thing I will ever have to do.  Not just for this, but for those dozens of little stinging things that happen to everyone.  Having no human vessel to pour these into to split the load and hear feedback is cruel.  But, it would be crueler still for my husband to have to endure these days....because frankly, his big compassionate heart would break over and over.  So, I'm glad he is where none of this touches him.

There is a lot about these treatments that can evolve and devolve each time.  I've only had 2 with another scheduled for the 24th, but there are enough similarities that I am learning how to plan ahead to a certain degree.  And, I am adjusting my preferred way of being ready, being pro-active and leaning on things I know will prop me up.  Yesterday, I had to go back to the treatment center for labs which led to a short infusion of fluids because my levels didn't look great.  Another reason, I have opted for a port....you can only slide in and out of veins so many times before they rear up and fall over backwards.

With round 1 and 2, I have found that days 3-4 & 5, are a bit dicey.  So, I need to figure out how to make these days more manageable for me.  Eating during this time is "iffy" - not because of nausea (yet), but because I simply do not have the feet, legs and strength to stand in a kitchen and make food for myself.  I have to have these ready to microwave.  So, while I am feeling better I need to spend some time in my kitchen everyday making little meals I can rely on.  I've also learned that working for me is likely not possible for the better part of a week after a treatment.......I HAVE TO BE OKAY WITH THIS!  My boss and my job have been more understanding than I could have imagined and the people who have to step up and in during my absence are some of the hardest working, unappreciated people I know.  They never make me feel bad even though I know this impacts on them as well.

My friend, Judy, lives near my treatment center so going forward (except for round 3 - Judy is taking an Alaskan cruise.....YAY JUDY!)  I plan to spend the day after treatment and maybe another day staying with her.  I'm learning that there is likely always going to be a need for me to show up at the clinic after a treatment because chemo likes to test me in little crappy ways.  I try to be careful with Judy.  She's had so many of her own set backs and challenges and yet she is always there....wanting and needing to help me.  Judy did not come with the word NO pre-installed and therefore you have to be super careful what you ask of her because she will move heaven and earth to do it for you....and she never considers the cost to herself.  This means my pups will spend more time in boarding and......    I HAVE TO BE OKAY WITH THIS!

My cancer support team is phenomenal.....they listen, they study my charts, my labs and then offer real options to things I am dealing with.  And they adjust with me, for me.  I have come to trust them that they don't want this to be awful for me.  I've never once heard them say, "well, it's going to be hard you know...you just have to suck it up."  This pisses me all the way off by the way.  I can show you some suck up if you'd really care to see it so offer kind suggestions to me or shut up.....YOU HAVE TO BE OKAY WITH THIS!  We all know people who have had cancer and have gone through treatment but I cannot hit on this hard enough.  Our journeys are NOT the same.  Because our bodies are not the same, we aren't going through this like a pre-fab cookie cutter object.  Tolerances, underlying health issues, age, life situations are all different and they all come into play here.  This is personal....as personal as grief....some just handle things differently....WE ALL HAVE TO BE OKAY WITH THIS!

Do I know people who seemingly sailed through this like it was a mild headache...yes, I do!  Do I also know people who basically went to ground and just shut out the world until they were ready to rejoin life...yes, I do!  Do I know people who lost...yep....my husband for one and we never knew what we were fighting.  Do I know people who won?  Yes....and I am so grateful that I get to see these success stories play out in real life with real winners that I know!  That is the hope I hang my lead shank on....I want to be them.

But more than anything, I want you....if you are traveling along with me to know me, to know this diagnosis, to know this treatment (which won't be the same for all of us) and know what we and the people we care about are dealing with.  I am here for your questions.  If you want to share the link to the blog I would welcome it and be so grateful that you think it might help someone.  I promise to try to live up to your trust in me.  Not gonna promise there won't be a bad word now and then....cancer can do that....it's hateful.  But, let's be honest, this dirt poor small town girl who was raised in the "patch" grew up on bad words, and good people, and honest hard work and a healthy dose of  God is in charge.  At 75 I am probably not going to change much.  With me you get the real me....all of it.  And....I HAVE TO BE OKAY WITH THAT!

My thing that made me laugh today is:  I no longer have to hunt for tweezers that like to run away and hide....I can pull that errant chin hair out with my fingernails!  That's a win folks!

Love and Light from 1/3 of the way through the tunnel.  Be someone's reason to smile today....they may be counting on you.

Ladies Only

 This post will most likely NOT be one for the readers who operate from a place of raging testosterone.  This one is to address the issues I have discovered from my ongoing journey with chemotherapy as a woman.  Sooooo.........while I can't keep anyone out of the room, I can warn you, some of this is not pretty or dainty or something everyone wants to know.

But, I promised early in that I would be truthful and real about my own journey in the hope that it might help prepare someone else who has to walk it.  Or, at the very least, let them know they are not alone.

Bottom line, chemo is poison.....plain and simple.  And poison takes prisoners and releases few hostages.  The handouts, the classes, the consultations can help to prepare you, but nothing actually resonates until you are in the grip of your treatment.  Because we are all different and different things affect us in different ways.

Mildly annoying but still concerning is the fact that your eyesight and your hearing may get worse.  If you are me, you turn the hearing aids up to max and find a stronger set of "readers" to get you by.

We've discussed the neuropathy which is a total bitch, but this week, we have to factor in the raging screaming fire in the joints and muscles.  Imagine the worst case of the flu you ever had and then multiply it by 10.  Your feet want to be cold because neuropathy is eased by cold, but your joints want heat.  This is fun.  Luckily, I purchased a couple of pair of cold socks quite some time ago and those have helped with the keeping myself in a state of "cold feet".  Amazon has these, but I got mine for free with my OTC credit with my Medicare supplement.  So, cold socks on feet and a heated throw folded over a few times laid across my knees with my feet elevated.....and some pretty heavy pain meds kept this beat down fairly well.  Could I walk?  Not very well.  Was I happy and sunny and pleasant?  Not at all.  One day, did I lay in the floor and cry my eyes out and beg for an end to that pain..........I absolutely did.....more than once.  Chemo is teaching me it has a schedule for me.  Treatment day (a long and tiring day,  day 2 - I feel fine, day 3 crap starts going south on me and day 4 is a total waste....and this time day 5 wasn't great either.  I just have to let chemo have its' timeline (which does not at all work with what mine needs to be.)  Today, I plan to go to work and hopefully work out the week and then perhaps I will have a somewhat normal week next week.....and then we start nearing starting the whole cycle over again.

Now comes the gross, icky, not for the faint of heart folks among us.  The ravages chemotherapy takes on the soft tissues areas of your body is not to be taken lightly.  Honestly, had I have known what I was in for, I would have gone into debt to purchase a Bidet for my bathroom.  Those mysterious secret places that we don't often focus on can become the equivalent of a flashing neon sign with red hot bulbs nearing explosion.  There is no toilet paper known to man gentle enough for these places....and since toilet paper is made from....well paper....it leaves a residue that eventually causes other issues.  Therefore, if you are a person of means....buy the Bidet.  You will also need to keep petroleum jelly and moisture control barrier creams at the ready.  And, I also utilize medical honey.  This is really messy, but when it comes to healing....it honestly cannot be beat.

Your throat will be raw, the inside of your nose will be raw.  Your mouth will be super sensitive (spicy food won't be your friend), and dry mouth will be an ever present companion.  Your taste buds will forsake you.  You will eat things you think are going to be tasty and find they taste nothing like you are expecting.  For me, citrus was the only thing I could actually taste that was remotely pleasant.

All of these things contribute to the overwhelming feeling of just plain old bone tired.  A tired that makes simple things like going to the kitchen to make something to eat almost more than you can do.  I'm learning to plan ahead.  I make muffins that can be microwaved from the freezer.  Tuna salad, chicken salad, things that can be spread on toast quickly....are my friends.  I utilize Walmart delivery and I commiserate with my dogs that I am just an altogether boring human being right now.  

But, I am learning to "tell" my oncology team what I'm dealing with and allow them to figure it out for me and they are truly invested in making this as easy as it can be for me.  I am grateful for that.  I have requested a "port" (which I should have done at the outset) because my veins just can't take the onslaught long term.  That should be happening in the next week or so.  And tomorrow I go for labs and a consult about how I did through this last round of treatment and hopefully to get my schedule for at least 2 more treatments upcoming.  It takes some logistical work to get drivers to take me for treatment as I don't want to use and abuse the good nature of those willing.

As always, if you have specific questions for me, please feel free to ask.  If I have personal knowledge that will help you I am only too happy to share.

Sending you all love and light from the path to better.  Be good to each other you have no idea what others are dealing with.

Day Three

 It seems this day will be my "iffy" day going forward.  A bit of a set-back for sure, but do-able.  One thing about this is it helps me know how to plan, when to expect to need a little help and how to navigate this particular day.

My feet are still much better than the previous go-round, but today my joints and muscles are pretty much well entrenched in enemy territory.  I'm weak and feeling rocky and I hope that this will fade away over night and allow me to go to work tomorrow.

One thing is for sure, this ain't no picnic and it will continue to remind me that by myself I am pretty vulnerable.  I am very grateful my son and Angie are here right now but I find myself wishing people could just come and sit and visit and not work themselves to death on my behalf.  I'm sendiing them home soon so they can maybe get some rest before their weeks start anew tomorrow as well.  They have kept me fed and taken care of the fur boys and tidied the house and the yard with little time for themselves.

I am a mom, I feel like these are things I should be doing for others not the other way around.  And, I really hope I can let them know how very much these sacrifices mean to me.

I'm anchored to earth by God and I feel His love very deeply and I know He does not hand me more than I am capable of but I also know He wants me to lean into Him for strength and wisdom.  

Keeping it real with you as always I vow to never sugarcoat this trip because honestly, you have to know the possibilities and you have to know you aren't alone.  Tomorrow will be a new and hopefully better day, but frankly....this one kind of sucks.

Psalm 40:2

 "He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure." - Psalm 40:2

After my first round of chemo, this was the day that neuropathy set in to such a degree that it led to a pretty bad fall.  I wound up spending several days in the hospital with all sorts of other issues.

That was pretty inconvenient for a whole lot of people and pups.

Because of this, I have been in a praying fever for these little feet of mine.  I was cautiously optimistic because of my good meeting with my oncology team prior to treatment last Thursday.  Their attentive listening to my concerns and pro-active attitude to helping with that issue (which thankfully has been my only BIG one so far) helped me to trust a bit.

But God.......He knew, He listened (to me AND to all of you) and He moved.....and HE WORKED!

I woke up this morning with feet that work.  They tingle some, they are a tiny bit numb, but they move me forward and I am not afraid I will fall.  But, I will be careful of them today and again tomorrow in hopes by Monday they feel like moving me to work and to have a somewhat normal week.

So.....for today.....I am sharing my good news and giving all credit to the power of prayer and the goodness of a living God who is always listening.  For those of you who read my little journal and are praying with me for specific issues, thank you so very much for caring.  Please know that I pray for you too even if I don't know exactly what you need, your needs are prayed for.  And maybe those of you who need a little push to believe that things unseen can actually be affected by a simple little "God, please help those who suffer" can actually work.  It's 6 little words, addressed to the Divine healer, it takes a few seconds, but oh, how powerful it can be.

Have a great peaceful fun filled Saturday!  Get YOUR feet moving but "Ponder the path of your feet; then all your ways will be sure." - Proverbs 4:26

Love and Light my friends from me to you.

Names I am praying hard for today  Debbie and Shane - please join me in this.

Working Out The Kinks

 

No filters, no Photoshop, just a clean face, tired eyes and a "wait and see" attitude.  Last treatment, this day was a good day and then it all went to hell in a handbasket the next.  I am extremely hopeful that the adjustments made to my protocol yesterday and the resources I have on board now will result in a better after party.

Yesterday started very early and my friend Theresa and I made it to my appointment in plenty of time.  This in spite of the fact that my maps on my phone insisted to taking us to a location different than the one she was told.

First thing was labs, not my favorite thing, the tourniquet DOES NOT need to be that freaking tight....my veins stand up and salute and you simply don't need to work that hard for them.  But, the good news here is my lab were wonderful yesterday......so much improved over the week before. 

The nurse practitioner (who I love love love) listened to me very intently and set me right on some things I had assumed were responsible for my neuropathy and made adjustments to my treatment that might improve that particular situation.  We shall see.  Everyone at Highland is very engaged with their patients and so very very kind and caring.  You actually feel like they see you a real live human person in need of love and care and not just a name on a chart.

We had one minor hiccup where the IV dislodged and this led to a leakage of chemo under the skin.  I noticed it immediately (so it was a blessing I wasn't asleep), but I made them aware and they removed the IV, relocated it, drew a lovely Sharpie circle around the reddening swelling area and then gave me a series of 6 tiny little stinging shots around it to maintain the integrity of the healthy tissue.  That was less than 5 minutes as they all hands on decked it.

We've discussed a port and I am not opposed to it but it would involve at least 2 additional appointments to accomplish this and they don't like to do a treatment on the same day a port is installed so some thinking to do there.  I know it would give my poor old beat up veins a good rest and we all probably need that.

Because of the rash I developed after leaving the hospital (likely due to the send home antibiotics) they want to lay eyes on me next week as well.  So I will utilize that appt to get labs done and hopefully they will schedule my next 2 or 3 rounds of treatment then so I can start the call of "drivers of needful people."

I came to realize early on that so much of my own fear of this diagnosis stemmed from walking into a clinic and seeing people who just looked so very very sick and hopeless.  It is truly a soul crushing experience.  I've thought a lot about this and about the actual people I know who have faced this.  I have realized that for some this is simply the best they can do, some don't want to try to do better and then there are some that want to take that diagnosis and drag it by neck and kick it every chance they get.  Those people send a very clear message, "you may get me but it won't be without a fight."  I am hoping to be one of those.  While I didn't wear the "hair" yesterday (because those days are all about comfy clothes, warm blankets, tasty treats and mind engaging activities) I did my makeup, dressed brightly and wore my dangly earrings under my fetching little head cover and hit the floor with jokes and smiles.  I got a few back in return....I feed on this.  I even coaxed a tiny smile from a very dour little gentleman who head covering I praised (it was a Razorback themed one) and he took a beat and then told me he liked my fuzzy socks.  They were black, grey and white argyle (totally matched my bright Aqua top with all the colorful embroidery) and I told him I was trying for a fashion statement and he grinned.

I will need help with this because by nature I am simply NOT fancy.  I'm messy and mostly unconcerned with how my appearance is perceived.  My statement has always been "I just don't want to scare little children."  But, during this passage I want to try harder to look as happy and presentable as I can....so you are welcome to hold me accountable for this in public.  But if you come here I most likely will not be the picture of womanly loveliness.  At home, I am as real as I can ever be.  Home holds acceptance for me, my dogs like me, my furniture likes me, the walls embrace me and God sits with me and holds my hand.  And the things of home are willing to hold my pain, my tears, my fear and my uncertainty and not reveal my secrets.

It was a long day yesterday and I left my furry kids at the boarders overnight again but they are now home enjoying their weekend company of their human brother TJ and his little sparkplug of a fiancee Angela.  (The Angela he calls her - I sort of love that)....more I love the positive changes she is helping him make for himself....this is what true love looks like....encouraging someone to be the best version of themselves all the time.

Everything in this life is a blessin' or a lesson.  I'm okay with being both because I think a lot of blessings come from some pretty hard lessons.  Today I know these things:  My Daisy girl is having her birthday today in doggie Heaven.  Headwraps can be a good thing because people don't naturally assume you are sick and bald under there, sometimes they think it is a cultural choice.  People need encouragement and something positive to see.  And people need to be seen as more than what they are enduring in life, they need to be seen as someone trying to put the best face they can on a very hard thing.  We are imbued by God with the ability to be a Job in life and to not be defeated in spite of some very hard truths spoken very loudly.

So

Be grateful

Be mindful

Be kind

Be soft and open

Be positive

Be "pretty"

Be courageous

Be an overcomer

Be YOU - there is no one else like you.

Love and light on this day of Independence!

Stand

Today, I am standing.  This has been my mantra in life for quite a while now.  I don't always stand for popular, politically correct positions.  But, I do try to stand on my own convictions and teachings at the feet of people with far greater knowledge than I.

Something I always do is try to stand on principals that have served me well throughout life.  Where does this need to STAND come from?  Perhaps from the old song I love from long ago.  Standing on the Promises of God.

As I journey through this newest chapter of my life, navigating clumsily trying to carefully pick my way around pot holes and road blocks, I am finding other travelers.

Friends, neighbors, acquaintances that are also somewhere along this journey.....that while similar is also altogether different.  I am finding that the path is NOT the same for anyone.  For some, thank God....it is easier.  For others.....so very much harder.  Some people, like me, have no "person" that holds their hand every day, squashes down their own fear and supports them.  And some, have those people who are invested in this journey with the person they love most in life and they are having to be unbelievably brave when all they want to do is fall apart.  I cannot know which is better.  Maybe neither.

What I do know, today, is we cannot lean upon our own understanding of the Divine mind of a very living and engaged God.  He knew us before we were formed, He called us by our name and we all belong to Him.  He knows our every thought, word and deed and he also knows the exact moment we will slip the earthly tether that sends us back to Him for eternal rest and peace.

Every day, along my road, I am seeking out the little signs along the way.  "Seek Me First", "Let Go and Let God", "Be Still and Know", and lately...."Stand."

I've said from the beginning, I am NOT in charge.  There are days where I feel swept along like dandelion fluff in a gentle breeze.  Other days, I feel tired and unwilling to push forward.  And then, there are the days when I feel that renewed little "push" saying "don't give up now....you are inching toward something important."  And so.....I remain standing.  Thursday brings around another event that was almost more than I could handle last time.  I am standing on the promise that God is guiding the hands that treat me with a better understanding of what my body needs.  I am standing that my support systems will stand with me.  I am standing on my own unique sense of humor to help me find something to laugh about in this next episode.  I mean, let's face it....the thought of me, a shower chair and a walker all winding up twisted together in a rather small walk in shower has to bring a smile.  Particularly when you know that all three objects emerged a bit battered but not fatally flawed.

I would ask today for your prayers for the fellow travelers who pop up every day.  Some with stories that have ended in triumph, some with stories just beginning, and for those whose stories ended almost before they began.  And know, we all are standing on something greater than we are.  I'm not sure how you can know cancer and not know God....I wouldn't want to try.  Cancer took my husband from me and we didn't know it was lurking there in the dark.  I know my enemy and I also know the supreme warrior that fights for me.  It is not me....I am putting my existence into the hand of the One who made me.  And, I'm trusting that I have a purpose here....still.  I'm trusting we all do and I hope we can each find it within ourselves to be present with our fellow travellers to listen and know their stories so that we can better support them and pray for them with intention.

The image of the lone windmill standing in the Texas panhandle brings me profound peace.  They look a little fragile don't they?  But, those structures endure years of unrelenting wind and blowing dirt and still bring forth moisture from the depths of the hard packed dry ground.  A triumph of engineering....for sure.  But maybe, also, a lesson.  Dig deep, pump hard, use the wind to your advantage and never stop looking for the life giving water.  When you find it, drink deep....God is in every drop and He will be your rest stop.

STAND!