What's New Pussycat?

 Much happening in cancer center these days.  Turns out while I was slowly poisoning my body, ruining my feet and hands and greatly diminishing my hearing and eyesight....a tumor was being born and growing in the area I had surgery.

My surgeon recommended starting radiation RIGHT NOW, but the radiologist connected to my care team wanted to do multiple scans.  So you know how this works....you wait for an appointment, then you wait for results, then you wait for a follow-up consult appointment because the one they scheduled for you was made in an alternte location 30 minutes after your scans were happening....and that location was almost 45 minutes away.  So you had to wait for another day.  That day came and since the radiologist knew you wanted to have your radiation done in the place you live, he pretty much just sent you packing.  The one thing he did do was suggest I get a DVD of those scans to take to the new radiation place.

The next day I walked in to the local facility only to find the other radiologist had not sent a referral so I walked in cold and plunked down my movie and made an appointment.  And I waited.  By the time I finally got an appointment with the new radiation doctor it had been 9 weeks since my final chemo treament.  He did his exam, ordered scans and embarked on a 2 weeks planning session on how best to treat me.  He did show me the pictures on the DVD (still don't know why I couldn't have seen those prior).  All that was on my mind was after all this time had passed how much had that tumor grown while be unbothered by any kind of treatment.  Quite a lot it turns out.

To date, I have had 7 radiation treatments and they are kicking my tail.  Because of the size and aggressive nature of my tumor (which I have named Tilly) my treatment level is pretty high.  Having to be somewhere every day is intense because the whole act of getting ready to go somewhere takes me forever.  It takes me forever because my feet still don't work and neither do my hands.

On top of this I am doing every 3 weeks immunotherapy....and surprise surprise both radiation and Keytruda make neuropathy worse.

I am still hopeful and optimistic that I can squeeze out a few more years.  I have 2 little dogs that count on me and I'd like to fulfill the committment I've made to them.  It is hard being in this place right now, because of neuropathy I can no longer do the things I'm used to doing to fill my time.  I can't sew, draw, crochet, knit or cross-stitch.  I can barely type.  So that leaves TV and I've watched so much of that I have a hard time finding things I haven't seen.

I rarely go anywhere for reasons mentioned above, so it's me and the dogs on the daily and I think they are bored with me but for now they are stuck with me.

Meanwhile I continue to ask these questions.

Why after all these years is cancer still "a thing" and why suddenly does it seem worse than ever?

Why do they put laundry rooms so far away from the actual source of dirty clothes?

Why do people turn up their noses at adopting black dogs? (Particularly shelter dogs)

Why do people in Arkansas not know how to merge?

Why do so-called Christian people refuse to forgive and move on?

Why do so many people want to take your story and make it all about them?

Where does a cancer patient go to have their toenail issues dealt with?

Who holds the answers to all these things that leave me wondering?

So that's what's new with this Pussycat.  She's not purring and cuddling up to anyone...she's got her claws out and is hissy and pissy a whole lot of the time.

But she's alive, still fighting, still trying to move out of this chapter into a better one.

Happy Thanksgiving!  Don't be a turkey!

And this year Shop Small - they need it more than big box stores or Amazon.

Sprouts

 In the spirit of keeping it real....I give you my little bald head.  Within days of my first chemo treatment my hair left me like it owed me money.  Oddly enough, I didn't worry about that too much....I felt that was the least of my worries.  Turns out I was right.

But lately I've noticed it is sprouting.  It's very hard to see but the chrome dome is covered with little sprigs.  In person it looks like a baby animal pelt.  I'm happy to see it but I know it's got a loooong journey and hopefully it can have a happy trip.

I've abandoned wigs altogether as my head is simply NOT big enough to make them look remotely fine.  So I stick with the caps with hair, or my cancer head covers (which seem to elicit a lot of sympathy when I wear them).  People tend to hold doors open for me or let me push ahead in line.  I don't wear them for that reason (mostly because my head gets cold AND I just don't think this old white woman has what it takes to carry off the bald look in public.)

I should have a radiation protocol set sometime next week and when that is decided I will immediately start those treatments (which are daily)...maybe we take weekends off....I'm not sure.

But....that will be 7-8 weeks and meanwhile I do the Keytruda infusion (immunotherapy) every three weeks.  This was a large component in my decision to hang up my working shoes....it was just too much to try to schedule since I always had to have morning treatments.

My neuropathy is still a BIG problem....I invested in a vibration plate and that came today so fingers crossed it helps out some.  Other than that I feel okay...not great...but okay.  Trying to stay on top of my house and me is challenging but I just do what I can when I can and learn to overlook a lot of stuff.

My friend Cathy rang the bell the other day and she sent me a video.  That is always an exciting day for a cancer patient as it signals the end of a phase of treatment for them...it doesn't signal they are cured...it simply signals they've progressed.  And for some of us that's okay.

In my good things box this week I had a great day yesterday with Theresa.  She took me to run errands and to my acupuncture appointment.  She also took care of toenails which has helped my walking a ton.  Then she came back last night and took me to a leave the house and have dinner courtesy of one of her friends (who heard about me through her and wanted to do something kind).  This was such an uplifting thing, to go to a restaurant and have a steak and a cocktail like a normal person.  I am so grateful for the people that see things and respond.  They will never know how much that means to someone who is virtually homebound most of the time.

I just finished my first week as a person with no job requirements and I have to say my stress level is a lot lower.  I will need to go in next week and get my personal stuff and sign a letter of resignation.  In and Out.  I will miss the people but not the pressure and the daily grind.  I think radiation will be grinding enough.

In the questions I would love answered department:  Why are they making movies these days that have no clear definitive ending?  Geez, you invest 2 hours in these things and are left wondering "what happened?"

Have a great weekend....we are having glorious weather right now.  I may brave the outdoors and try to soak up some sun and fresh air.  Be kind and be grateful.  Pray for those you know are struggling and then just pray for everyone else that they never have to.

God is reaching out....reach back....he will take your hand and you will feel better.

Decisions

 

Decisions.  I am so tired of having to make these.  But make them I must.

I've been quiet lately on the matter of cancer and what it means to me but it's time to spill it.

I am currently waiting for a radiation treatment plan to deal with the tumor that formed and grew like Alice during chemo.  Honestly I was hoping to get this going right after my last round of ehcmo but I am dealing with foot draggers in the medical profession.  Since that alien grew during the period of time I thought I might die from poisoning myself, I can't imagine what kind of party it is having in these many weeks that have followed.  I can't speed things along, I can't impact on things at all....it's just my body...just my life.

Meanwhile, my feet and hands are refusing to get better and I'm starting to think they never will.  Again, I've done everything I can on this front and can do no more.

All of this to say, today I quit my job at FedEx Freight.  A job I have enjoyed for 9 years.  The hours were awful and more problematic after I lost Roger, but it was a good part-time job for someone my age.  And, they have been wonderfully patient with me over the past year....I have missed a ton of work.  I loved the people I worked with and I will miss them.  But other than financially, that job no longer served me.  And, right now, I need to focus on me, on my health, my peace of mind and my ability to fight on through whatever comes next.

I was struggling to get in and out of the building and I could not bill fast enough or accurately enough to keep us at goal.  At the beginning of this journey, I told my boss that I would do it as long as I could but when the time came....I would fire myself...I wouldn't make him do it.

I think I will be fine.  I don't feel well enough to go running around town with girlfriends so I shouldn't be spending a lot of money and other than trips back and forth to doctors I shouldn't be burning a lot of gas either.  Hopefully, I can afford my streaming services since that is about all I can do right now is watch TV.  I would love to be productive during this time but my hands cannot crochet, embroider or sew.  Anything "fiddly" doesn't work for me right now.

So, I continue to ask for prayers not just for me but everyone that is dealing with "life" and finding it hard.  On a positive note, my friend Cathy had her last chemo treatment when I was doing my Keytruda infusion.  I didn't get to be there when she rang the bell, but I clapped for her before I left.  She has such a good attitude, I hope everything goes great for her going forward.

So, this week has been Decision Week for me and I hope I've made good ones.  I certainly didn't mske them rashly.  I thought long and hard and prayed hard as well.  In the end, I will do what I've always done.  No matter what decision I make, I'm always ready to take the consequences of them.

Thanksgiving approaches and it's time to count the blessings.  Maybe this year we can count them and then make an effort to enrich them and pay them forward.

I love each and every one of you so much and am so grateful for you in my life.

Tattoo-es and Bruises

Today was a day long coming for me.  I thought by now I would be well along in my radiation therapy but I was wrong.

I had 3 consultations with the radiologist in NWA and finally got my stuff referred to the local unit here in Fort Smith.  I simply can't do a daily up and down he mountain this time of year particularly.

I really like this local radiologist as he painted a prettier picture for me than the guy up north.  Although the protocol will be about 2 weeks longer than I was told initially.

I almost forgot my appointment today (I thought it was tomorrow).  But I managed to arrive in time....had my exams (not fun), had 2 CT scans (also not fun), and got 3 tiny little tattoos (that hurt like the dickens).  Those little tattoos the size of a small freckle are now surrounded by gigantic bruises.  I wish Roger was here, no one appreciated a good bruise quite like my husband did.

I have a Keytruda infusion Thursday.  Hopefully sometime this week I will have time to do this mountain of laundry I have been growing.  I never realized just how tiring laundry can be.

My feet and my hands are still numb which is causing me some issues at work since I simply cannot type as fast as I used to.  But all I can do is all I can do...if it isn't enough, I guess they can send me home.

I am super done in tonight....I think I'll feed my dogs and hit the hay.

I wish you all the best of all good things.  I pray for those of you that I know are struggling with things and I hope you include me in your prayers as well.  I certainly know I would be nowhere right now without the ernest prayers of the faithful.

God is so good to me, He provides for my needs daily, He carries me when my feet fail and so far He hasn't let me fall on my face.  I am very grateful.  And so grateful for the friends I have that allow themselves to be used on the daily.  I am certainly very blessed in spite of all the challanges I have.

Pray with intention for every issue you know.  Speaking it counts.

I love you all.   

I Ain't A-Skeered of You!

It's Halloween!  All my life this has been my favorite time.  Not because of all the negative connotations of this event, but because of the great memories I have from childhood.  But today certainly put a particular twist on things for me.

I had a radiology consult today (more on that later) but my friend Theresa and I were placed in an exam room to wait.  In a while a young lady came in and she was wearing an orange jumpsuit, had a do-rag tied on her head and she was heavily tatted in the face and neck area.  I mean did it enter my mind what day it was, no.  And after she took all my information and left, I remarked to Theresa that I wondered why they put their nurses in the equivalent of prison garb.  We chuckled over that fact until the doctor walked in wearing a policeman's outfit.  Then the day turned out to be pretty funny.  All the doctors were dressed as LEOs and all the staff were "prisoners."  They had mug shots on the hallway walls and their theme was "Lock Up Cancer."  And those tattoos?  Total fake.  Decals......every.single.one.  But totally believable!  I may have to have one.

While all this was super fun I did come away feeling pretty good about going forward with radiation.  This doctor showed me pictures of where my remaining tumors are and he was optimistic about being able to impact on them both in a positive way.  The Radiologist in NWA kind of gave me a "doom and gloom" prognosis about the small node high in my left side, basically saying he didn't think it was treatable.  He had me scared.  Luckily, for me, getting daily radiation that requires an hour travel time wasn't feasilble so I opted to have this portion done locally.  I told the doctor that I am trying to fight this and need someone to fight it with me....to be invested in helping me live not preparing me for the end.  I am a realist, I know I'm not here for 20 more years (even in the best of health), but I'd like to turn this page and have a few years that aren't cancer driven.  He assured me that he would do everything he could to help me do that.

Leaving the clinic, I stopped to talk to a young man and asked him if he had his wand with him because my feet and hands could use a little magic.  This is what he was wearing complete with ligtening bolt scar on his forehead.

 Long live the joy of dressing up and pretending to be someone else for a minute.

All I can pretend to be is a hairless cat.

May you all have good news today, no matter how small.

Waiting to Exhale

It is almost 8 am and by this time a year ago, we had already switched from tending to the needs and wants of my precious husband.  Now, we were expected to get about the business of realizing the crushing import of his life ending.  Fast.....all we have ever been able to say about the month leading up to this day....it went fast.

We weren't ready.  How do you prepare yourself to lose the glue that held so much together for so many people.  You can't.  Instead you just flip that switch on your internal cockpit that says "Autopilot" and away you go.

As a wife, you are right away thrust into this new reality.  You live in the same house with all the familiar things but the beating heart of your life is missing.  No longer do you hear "Hey Babe, can you come here for a minute?"  The patio door doesn't open as often.  There's no damp paper towel wadded up in the sink and you suddenly find you have trouble breathing.

Oh, sometimes, your ragged breath is torn from you in uncontrollable sobbing as your white hot tears trace now familiar patterns down your face.  Looking in the mirror you are shocked to find there is no scarring left behind that is evident to others.  No.....the scarring is on your heart and it seizes with memories that make you gasp and hold your treacherous breath....afraid to let it go....what if those memories go with it?

But, then you realize....those memories of the man you loved are so much a part of the fabric of your being, you couldn't lose them if you tried.  His face is as clear today as it was a year ago and the things that made him special are living and breathing in his children, in his friends....and in you.

My husband was kind, tolerant, gentle, compassionate, selfless, understanding, patient, encouraging, dedicated, loving, witty, shy and patient.  And he was a million other things....but he was my everything.  From the moment we caught each other's eyes around a convenience store gas pump, there was no one else on earth for me.  And never once did he give me reason to think he might prefer to be tethered to someone else.  And most importantly, he never gave me cause to be afraid of him.

I could write hundreds of pages about what he meant and still means to me, but somehow it seemed better to keep this like Roger....simple.  And so my love.....today I exhaled and I found I had no need to worry.  You are still with me, you still comfort me in the night and you are still my forever.

 

                                       "Devotion is love with wings" - Nietzsche

Needles and Pins-a

 

My 6th and final round of chemo proved to be a demon.  Always before I waa able to get to the point of feeling better after a brutal follow up week.  The last one is still hanging around but I think we may be approaching the final leg of that particular journey.

Maybe the fact that I just decided that I would do whatever it took to get on top of it.

So, in the spirit of transparency I will tell you that this child of the 60's aka Hippie Wanna Be did in fact embrace the benefits of medical marijuana.  And, yesterday I experienced accupuncture for the first time.  Both of these things have helped.  My feet are still not great but yesterday I was able to navigate life without "Matilda" (my walker).  Matilda and I have a bit of love hate relationship as she likes to go off on her own from time to time because I forget to lock her brakes.  I do love the fact that she is like having a purse on wheels to hold all my stuff.  But...she is a "friend" I was not ready to love therefore, we tolerate each other.

The accupuncture really did help.  My mattress is very old and the position I have had to sleep in (I fall in a divot) for months because of my feet has not done my sciatic nerves any favors.  Last night I was able to fall asleep without my cold therapy socks for the first time in I can't remember when.  I woke up at 5:30 am and had not been up even once all night (also not usual).  I am celebrating these little wins and giving all glory to God for putting the right people in my orbit to make truly helpful suggestions.  And praise God I am willing to be open to practically anything that might help move me forward in my treatment path in the hope that I can stand after this as a survior and a thriver.

My son and THE ANGELA are here again this weekend to hang out with me and do my bidding.  I enjoy them being here.  My son and I have a similar twisted sense of humor and he makes me laugh....sometimes when I shouldn't.  And Angie is a little cyclone of busyness so I just sit back and let her work.

Last year on this day we were preparing to bring Roger home from NWA.  After all the twists and turns, the starts and stops, plans and disappointments, we had realized we had just a little time to utilize and we wanted to be home.  Roger was concerned that he looked a looked a little rough around the edges and so this happened:

I just love this picture....there is something so tender and sweet about Rick serving his Dad by trimming his facial hair.  This is love, respect, and honor visualized.  Rick has taken on board the words his Dad gave him about going forward in life and every day I see evidence of his desire to live in the way his Dad did.  Not only did he make his Dad a priority during those last precious days, but he has also made me one during this journey I am on.  I am very grateful for him and his wife, Paula.  I know Roger asked them to make sure I was okay and they have certainly embraced that instruction....Roger has to be proud.

I just love the fact that my husband looks totally at peace while this trim is happening.  He was talking throughout this process and I just sat back and watched, joyous that these 2 had this moment together.

On this day a year ago, my time with my husband was speeding to the finish line and all I wanted was to hide him away and keep him for myself.  But he was so loved by so many people and time was so limited, I had to share him.  I sat in a lot of corners, watching and listening....but I never let him see me cry.  For Roger, I only had smiles and little inside jokes and naughty innuendos (he loved those.)  He was the best thing that ever happened to me on earth apart from my children and I will strive everyday to be a person he would be proud of....the person he always believed I already was.

This song really isn't a great one but I included it because it is the title of this post.  If you listen to it tell me if you this the Searchers just threw a bunch of random words into a salad bowl and then strung them together with music.  I give you Needles and Pins-a by The Searchers!

https://www.youtube.com/watch?v=ugDXpdjmpgw

Have a wonderful weekend.......tell someone you love them....somewhere someone is waiting to hear they are valued.

LKB