Sunday, October 11, 2020

Fever

 This blog will finally explain why I had to be in the hospital and what is this crazy thing with my wound that won't heal...and why I need another surgery...and all the other medical mess I have been wading through since July...it's a long one so it might be good bedtime reading...

Hello  Darlings...

it's been a while...

We are still in the middle of a global pandemic, an election year and fighting for racial justice and equality...I'm not well versed enough on these things to discuss them here and that is not what you come here for...

no you come here to find out what El Diablo has been up to and what life with cancer is about...just about as much "no fun" as politics!

So I finally got to have a little summer vacation...

IN THE HOSPITAL...

6 days worth of vacation.

I don't recommend it...

the food is terrible and being attached to an iv pole is certainly no fun...

there are no fun activities and sunsets are blocked by all the medical buildings...

there is no bar and no pina coladas...

no pool to lounge by or have cute cabana boys bring you umbrella drinks...(but the nurses are adorable)

no beautiful room with a view and a fabulous bathroom with a tv to watch while in the tub...

you can't even wander outside your room because of COVID...

but the nurses were truly amazing and wonderful.

But honestly I would have far preferred a trip to the lake or the beach or Kauai...

I woke up one morning feeling just awful...had my coffee and ended up napping. Felt worse after my nap and suspected I had a fever...the cat suspected too because she was all over me.

I went to my bedroom to take my temp and given that I managed to buy a thermometer that only reads celsius it made it a little tricky.

(I'm sure there is a way to make the thermometer read Farenheight but it has escaped me and it came with no instructions)

So after a little conversion via my phone I found out I had a fever of 101...woo hoo that was gonna earn me a trip to the ER (because when you are a cancer patient you can't get fevers like that). Do not pass "Go". Do not collect $200. Go straight to that space on the board marked "hospital".

I called my doctor and she said to come in...when I told her my temp was climbing and I had some shortness of breath she said "go to the ER...the doctor will have alerted them by the time you get there".

Called my daughter, took a shower and washed my hair (because God knows when that was gonna happen again once I had my port accessed and meds going in), packed a bag (I knew there was no way I wasn't going to be admitted because this is about my 5th rodeo with this and not my first), threw on my favorite dress of the moment (a bright turquoise Mexican dress given to me by sweet Nurse Jamy), and off we headed to the hospital.

She had to just drop me off...

no going in with me...

so I got "screened" (by then fever had risen to 102.5) and was sent to the desk so I could tell the man there that I needed to be seen and needed a COVID test. 

Out comes a nurse who pretty much assumes by my garb that I am just some desperate housewife looking for a rapid COVID test.

I explain that my doctor had called ahead and wanted me to be seen but it fell on deaf ears. I was delirious with a climbing fever so I'm not sure I explained it right but in any case I was told where I could go get a test...

pppfffffffttttt....

I went back outside and sat on a bench and texted my doc where I was and what was up...

She sends back a message that they are sending a resident for me.

So I sit patiently on the bench and out comes the triage nurse and a man who appears to be a resident about 10 minutes later. They go around asking everyone BUT ME if they are me...I wave...not noticed...

I'm a pretty big turquoise blob so I am still not sure how they missed me...but there I was...with a big pink suitcase, a walker, a big pink purse and a big turquoise me...

Doc calls and says they are looking for me and I tell her I am outside on the bench and I am pretty sure they just looked over me...I go back in and the screener says "Baby they are looking for you" and back to the guy at the desk who is suddenly flustered (seems my doc went a little nuts with the department for leaving a woman with a 102.5 fever and cancer to sit in the valet area).

Stickers are printed...like he literally had the stickers (with my name and codes) right there...

now in medical world when you have a STICKER you are being seen...no maybes...you are getting attention.

Nurse finds me and apologizes profusely and so does resident...by then my fever is 103.5

needless to say I am taken right back

The ER at the hospital is a new space...and it was FULL of people...some even in beds in the hallway.

As I am a suspected COVID case I'm put in a room with another person separated by a screen.

I am masked the whole time.

So now they have to figure out why I am sick...maybe COVID or maybe the wound on my stomach.

I'll back track a bit because this might be the weirdest way I have ever gotten a wound.

Back in July a few days after my last Keytruda infusion I went over to GOTT and GOTTESS's house to pick up mail and use their pool while they were out of town. I was sitting outside reading a book when I felt an intense burning on my stomach. It felt like a laser beaming down to this one particular area on my belly where 8 months previously I had injected myself with blood thinners. The area was fully covered by a black bathing suit. When the burning became too intense I jumped into the water. A few hours later when I got home I could see it had blistered and popped. It was red but not awful but 5 days later it had turned into a wound despite my cleaning and care and application of triple antibiotic. It looks like a second degree burn. The cancer chemo pills I am on impedes healing so that was not helping at all. Prior to my visit to the ER my oncologist saw the wound and stopped all chemo meds and did a biopsy and had me treating it with topical antibiotics. So we knew I had a wound...we just didn't know what it was doing to me...

So back to me in the ER...

I'm laying there and they are poking me with multiple iv's and heart monitors and ultrasounds and x rays and no one can figure out what is wrong with me---except thankfully my COVID test was negative.

I do not do well with needle sticks. My veins are delicate and blow very easily. I have an iv in my ONE GOOD VEIN in my arm and one that is super painful in my hand (which I cry when she sticks me but she had no choice...I had to have 2 iv's and they can't access a port in the ER).

My temp stays at 103.5 and I'm on fluids but able to get up and walk to the restroom myself.

ER doc is not sure what to make of the wound and how I got it so he takes a culture (earlier that week I had a biopsy on it as well). He's doing his best to get me stable so I can go upstairs.

Everyone who asks how I got the wound is flabbergasted. 

Yes I just used the word 'flabbergasted"...it's the only way to describe it...

At some point while I'm fever delirious (and with the chills) they bring in a very sick man and put him on the other side of me.

What transpired was over an hour of about 8 people working on the man. What amazed me was how extremely calm they all were. One guy seemed in danger of getting a little antsy about it and I noticed the doc that was running things let him go "find something" as a way to get him to chill out.

I have no clue what was wrong (nor was it my business) but I did know they were saving his life and that he was very ill. But the calm that presided over his care was impressive---nothing like Dr Green getting really excited and yelling at Susan in an episode of "ER".

At some point I had been there about 5 hours and I hadn't eaten for 24 so my nurse made sure I got a meal delivered to me on a tray. No clue what I ate. I just felt bad eating with the guy in the bed next to me possibly dying. But my nurse said I needed to get something in me.

They were running an antibiotic in me that turns me red so I looked like I had spent a week in Cabo without any sunscreen and was burning up and chilled at the same time. My hair which was never fully dried was piled on my head with a scrunchie and it was a rat's nest from not being brushed but rather hastily thrown up on top of my head so that it could be out of the way for medicall stuff. Yeah no photos of me looking dreamily (and filtered) laying in bed being attended to...

A new nurse took over and she was also awesome...she kept checking in with me and telling me she would get me upstairs as soon as the patient next to me was stable and that the room and nurse upstairs were ready for me.

I also had a tray sitting on my lap for an hour and half and she was horrified to realize she left me like that...I was so out of it I didn't really notice.

We get me upstairs and I am put into what amounts to the tiniest room in the hospital...last time I had the Princess suite so I'm gonna call this the Pauper's room. I actually preferred the smaller room since I couldn't have visitors and it meant it was small enough I could pretty much get all around the room without unplugging my iv pump...

it's the little things people...and in this case I mean little...

My awesome nurse gets me set for bed and drugs me up and tries to control my fever.

I'm fevering so bad I have the febrile shakes and am literally shaking all over---that's when I know it's a bad fever.

I get feverish sleep that night and as usual just about the time I am sleeping it's time for meds, vitals, or labs or I need to pee from all the fluids they are pushing in me...and I  am drinking as much water as I can to flush all of this out of me...

I'm still itching and red from the vancomycin so that makes it all extra fun.

The next morning I can finally get my port accessed and my arms are free of the iv's that are hurting and I have more freedom but still fever...it goes down to 100 but then pops up again.

Docs still can't figure out what the heck is going on and I'm being pumped full of antibiotics and Tylenol. 

Shall we discuss hospital food?

On second thought....no....

I just order whatever I think I can choke down which is not much while I am very sick. 

Being that sick you don't much care for what you are given to eat...but I do remember enjoying some ice cream and I don't recommend ordering fish in a hospital...and I think grilled cheese was a safe choice one day...

You have to order by 7 pm or you won't get dinner...so most nights they call if you forget to call in your order. I wish they let me order for the day but this isn't regular room service and I am glad to have them remind me to order (most days).

All my food is delivered in paper boxes and with plastic ware. It's not terribly warm but again I'm not there to eat...I am grateful when they decided I was no longer an incubus of the viral plague and started bringing my meals on a real plate under a plate cover and with real forks and knives.

I spend the next 3 days shaking, peeing (from all the fluids), and watching tv that I have no clue what I am really watching...

I do recall Golden Girls and Frasier in the wee hours of the morning when I could not sleep.

I'm extremely grateful they took QVC off the chanel lineup so that I don't end up ordering things while drugged up...again...

Once when I was on morphine in the hospital I managed to order a few things with the handy app on my phone as I watched QVC. Days later when I am finally home boxes appeared. In my drugged up state I had ordered a primer, an eye shadow pallette and a dress. 

Thank goodness I liked all of them...

But this time I was not on morphine but delirious so it was good that there was no QVC...heaven only knows what might have appeared on my doorstep...

Doctors on my team rotate in and out...they are doing the best they can.

Dr. Rockstar comes to see me and she is full of her usual sparkle and love. Dr. Sweetmeds also comes by and I cry because she is always so incredibly thoughtful and kind. 

They tell me that apparently the infection I have is a GOOD sign about how the chemo drugs are working in me and so despite the fact that I am stuck in the hospital it is not a terrible thing.

So weird to have an infection of unknown origin be a good thing but at this point I will take whatever good news I can get.

And I am relieved it's not shingles because at one point they thought I had it...

But then they tell me that I am overloaded with antibiotics (I think my red skin and itching all over might have given them a clue) and that now I am apparently a walking yeast infection since the antibiotics have killed all the good flora in me.

Oh and I have staph in the wound---but it's the good kind? 

I stop asking questions and just focus on getting fever free so I can get sprung.

And I call myself a walking bagel when I text Aunt Jane the latest...I'm just one huge round thing of yeast...super fun...or maybe I should have called myself a mushroom since I'm a fungus? In either case it's not good...

I'm super blessed to have amazing nurses each day and I even get to see my beloved Adam and Mimi...I honestly would check into the hospital just to be under their care.

I have to wear a mask whenever someone is in the room but otherwise I don't have to which is a relief.

On Saturday night I am reunited with one of my favorite nurses: Lorena. 

She was fairly new to nursing when I was in the hospital in November but by now she has been deep in the trenches. She used to be a school counselor but felt her true calling was nursing. She was right to follow her true calling. 

Last time I gave her one of my bracelets...she keeps it in her car and tells me she thinks about me daily...I believe her. 

On Saturday afternoon I get a fun new symptom: peeling and incredibly dry skin. I couldn't get enough moisture on my lips---they were peeling like they have been sunburned. And my face was peeling too and so was my hairline...I kept putting on moisturizer and drinking but the peeling kept happening...

My fever finally breaks on Saturday and I feel like a new person...albeit a new person who's skin is peeling off like a snake and still has to lumber around with an iv pole in my tiny little room.

I'm not allowed to wander the halls or even go to the nurses station...the COVID precautions are very strong...that keeps the nurses safe from me wandering about and doing my usual nonsense on the floor...

Precious Chizoh is my nurse tech that night and once again, as she did in November, she offers to bathe me and changes my sheets and helps me to feel human again. The woman is a saint. So is Elysee. I cry with their kindness and love...

Sunday morning fresh hell is delivered in the form of 60 mg of prednisone. I thought it was 10 mg but find out later I was mistaken.

Let me describe my relationship with prednisone:

HATE

yes hate...I literally detest it and I know it's going to be a while before I can get off.

The jitters start, my face turns redder and I can feel my body swelling by the moment.

I'm literally turning into a live balloon animal...I feel like the snake in the movie "Shrek" that he blows up and makes into a balloon...

If prednisone was a tv character he would be Joffrey Baratheon (and for you non Game of Thrones people lets just say BARNEY...annoying and makes you want to throw things...)

If prednisone was a food it would be unseasoned white rice because it makes you want to binge on carbs but nothing tastes all that good...

If prednisone was a color it would be red because it turns you into a heat machine....

I think you get how much I hate prednisone....it's like having to eat liver every day...and the pills are super bitter...

So I get the whopper dose of prednisone on Sunday and things start to go all kinds of sideways but thankfully no fever.

The high point of that night: another sponge bath...the low point: no sleep and I forget to order my dinner.

Let's start with dinner fiasco...Elysee comes into my room to take vitals at 6:58 and I realize I had forgotten to order my dinner. 

It was the one night they didn't call to ask if I was going to order. I had this exact problem back in November. I have a plan for the next time: a timer on my phone.

I call and get put on automatic hold and then the phone abrubtly ends the call. I call back and it is 7:01 and no one answers. 

So much for dinner.

I call the nurse and despite the fact they are understaffed and having patient issues Lorena swears she will get me dinner even if it is just a sandwich from the cafeteria. Honestly I don't care and I offer to take myself down there but she isn't having it.

They are so overwhelmed with patients no one can go down until almost 9 and when Chizoh gets there the cafeteria is closed for the COVID cleaning they do several times a day. It's not until 11 that I finally got food. Trust me I wasn't starving and honestly I should have just cancelled but Lorena again wasn't having it and knew I needed food with all the drugs.

I eat and then become so engrossed in a Ryan Reynolds movie that I lose track of time...Lorena comes in and says I need to get some sleep and gives me a sleeping pill. I am determined to find out who Ryan falls in love with so that doesn't help the sleeping matters. But I take the pill and pray it works...

It worked...

KIDDING!

at least I found out who Ryan ended up with...

Finally around 3:40 am I start to drift off...thank you prednisone...

At 4 I am woken to take vitals and can't get back to sleep until 4:45 and at 5:00 poor Lorena has to come in and take labs...she feels awful for me...

So I got two 20 minute naps that night. Thank God for Frasier...I also check out to see if my friend who  does the early news is on and what she has on (she's always super gorgeous even at 4:30 am)

On Monday the doc declares I must be fever free 48 hours to be released (so 6 pm on Monday) and that the prednisone is going to continue for some time.

I have a meltdown.

Total meltdown.

Like crying my eyes out...hiccuping...having a HUGE pity party...

I am on no sleep, my skin is peeling, I have a fungal infection all in my body so that I am a walking mushroom, my hair is a rat's nest so I look like a very blonde version of Bellatrix LaStrange, and I can't go home until evening...

My nurse for the day, a precious girl named Jeanna (who I immediately bonded with over my nail polish color...she's my kind of girl) comes in to find me weeping uncontrollably (thank you Jeffrey Baratheon prednisone) and calls the doc and insists that I get some Adavan so I can calm down and maybe nap.

Doc orders Adavan and Jeanna brings it and hangs another bag of God knows what...I order fish for lunch (bad idea) and finally get about an hours nap in the afternoon.

I feel like hell.

I'm finally done with iv's so dearest Adam comes in and takes out my port line and can tell that the prednisone is doing a number on me. 

Doc orders a higher dose sleeping pill so that I can maybe sleep that night...one can hope...

Finally at about 6:30 I am released into the wild again and I get to go home.

Aunt Jane is there to pick me up and to come stay at the house with me to make sure I don't have any issues. The woman is a saint and I am beyond blessed to have her as my aunt, best friend, caretaker and "person".

As much as I want to get home to my own bed and my kitties it is a bit scary to leave the hospital...as much as I hate it in there I always feel very safe and cared for. 

I get home and take my temp every hour...thankfully no more fever but I do feel like I have been put through hell.

I get a real shower and Aunt Jane makes sure I am good and settled and we dig in to watching Hamilton (me for the 5th time...still loving it) and I finally relax but continue to reach for my imaginary iv pole every time I stand up and walk about...when you are attached to one for 6 days you tend to feel like it is an extension of your arm.

Being home I finally rest better but sleep is still elusive until about 2 am because of the steroids...but at least I am in my own bed and I don't have anyone coming to take my temperature and blood pressure every 4 hours.

My cat, who has been very sick herself with kidney failure (which by a miracle and the support of friends we were able to stop further damage from but she still needs daily hydration via a needle under her skin), hangs with me as close as she can so she can watch over me. Dragon, my other cat, insists on sleeping on my legs to anchor me down and keep me from leaving again.

Pets know when you are ill...

they also know the difference between when I have returned from a fun few days at the lake with KuteKaren and when I have been in the hospital. 

So I have been home for a while and the aftermath of the hospital stay was not much fun either...the prednisone continued to bother my sleep and is caused me to have the dreaded "moon face" (where your face gets even rounder and puffed up) and I have swelling so much in my left leg that the cat literally leaves footprints in my skin unless I take a diuretic (which makes me spend all day in the bathroom).

The drugs also did some unspeakable things to my gut that as open and honest as I am I will draw the line at discussing that here but suffice it to say "mortified" is the best way I can describe what happened to me.

I couldn't work out because of the wound and the continuing gut issues and I really really missed being on the bike.

COVID continues to keep me locked in the house except for the occasional jaunt to the Cancer Center or to pick up things curbside. I haven't been inside a restaurant since early March when KuteKaren and I had a visit to our favorite sushi bar (and yes I really miss sushi but bringing it home "to go" is not appealing).

So there's the story of what happened to me since I told you all it was too long for a regular social media post...I literally sat in the sun reading a book and ended up in the hospital.

Let's just all agree no more sun for me...

Most of the peeling finally stopped (after 3 weeks...yes 3 weeks) and weirdly it has taken years of sun damage off of my skin so although I eye my lounge chairs outside where I used to love to lay like a lizard in the sun I will not be venturing out again to do that. I'll just have dark roots and no tan...but my skin is looking great especially on my arms.

it's a spa treatment that I really do not recommend

As for the wound: I STILL HAVE IT...

as I write this it is October 11 and the wound is like a second degree burn on my stomach.

this has been going on since July 10.

After all the prednisone and antibiotics it still won't close so now I am seeing  wound care doctor and she is treating me with all kinds of wonderful things like honey in the wound and an antibiotic patch.

She also did a culture and I have some sort of "fancy" (her word) bacteria plaguing me that is hard to treat and between my penicillin allergy and chemo meds it is hard to find a drug that works but the team (onco, wound doc, pharmacy doc) decided to put me on Levaquin. It can lead to tendon tearing (so no bike for me) and heart rate issues (so no bike for me). I'm being careful still and I am glad I am done with it.

My onco also wanted me to see a dermatologist...

So she finds a derm she thinks is the right one to help with this wound stuff and gives me her name. I keep forgetting to make an appointment and they keep forgetting to call me.

Finally I get a call from them and I tell them I want to see a specific doctor.

Appointment made.

Aunt Jane comes to help me get there since I am now on a walker and we get there only to find out the requested doc is not there on Wednesdays and it is indeed Wednesday.

I pitch a fit and become very frustrated.

Yes, I became "a Karen"...(apologies to my friends KuteKaren1 and KuteKaren2 and KuteKerin)

Aunt Jane suggests we give the doc that I do have the appointment with a try.

Well in walks an angel and she is indeed the perfect fit...God was with me and I was fighting him.

She did a biopsy, a culture, blood work and gave it a good look and told me to continue with her and the wound doc.

BEST NEWS: she doesn't think that my wound should impede me from having surgery so pending the outcome of the biopsy and culture she plans to send Dr Muppet a letter stating I am good to go.

Glory Halleluyer!

She has me on another antiobiotic and some new topical med and it seems to be working...

Now on to other things---because wait: THERE IS MORE!

Because with me and the cancer it can't just be one little thing like fighting the cancer...

so here's the rest of it...

Just prior to going in to the hospital I had a scan.

I had my first scan since November....and it was a GOOD scan.

In November I had 10 measureable lymph nodes. At that time 5 had grown and 5 had shrunk. Dr. Rockstar and I were fairly pleased with that scan....and it was before we changed my drug protocol.

But then the spine stuff happened and everything went sideways and whatever was happening on the scan was less important than what had happened with my spine.

But then I got to start immunotherapy and a new cancer pill and my CA125 marker started going down and I was feeling pretty good except for some issues that continue to plague me with my spine...more on that later in this blog...

So back to the scan---this scan (from July) looked so much better than my previous few scans...

I'm happy to say only 4 lymph nodes were measureable and all were shrinking...

which in cancer world is a very very good thing...

I'm not NED (no evidence of disease) but it looks like I'm at least stable or that the cancer isn't growing right now...so it's still there but it's behaving...

El Diablo is in a time out!

So now onto the spine and the follow up for the wound...

And as it turns out my MRI I had on the same day as the scan in July has revealed that I still have a serious disk issue so I am in for another stay in Memorial Hermann very soon (probably in November) and there will be surgery to correct it. 

I have compression on a major nerve and it is causing pain and issues to my mobility. 

Serious issues. 

And a screw that is loose---and not just the one in my head lol...(reading that sentence should be accompanied by you hearing a drum rim shot in your head as you read...yes it is a corny joke but hey my onocology team LOVES it)

I have been in pain with this since the surgery last year. My left leg will not lift on it's own. I get horrible pain upon standing. I can only stand for maybe 10 minutes at a time.

And it's getting worse...I am more and more dependent on my walker again. Last weekend the pain was so bad I needed pain meds.

It's a miracle I can ride my spin bike at all (but not now) but it is the one place I don't hurt. And where I feel "normal".

I knew there was an issue after surgery because I could not lift my leg off the bed. I was practicing yoga 5-7 hours a week so my legs and core were strong but I could only lift the left leg about 2 inches off the bed while my right leg I could easily get into a full lift that was perpendicular to my body.

Ding ding ding...Houston we may have a problem...

Doc said to wait and let it heal because the cysts on my disk had put a lot of pressure on my nerve and I had some pretty bad spinal stenosis.

Had my 3 week checkup and it had barely improved...but we needed to wait...nerves are slower to heal.

Had another checkup prior to the shut down and Doctor Muppet (he looks like a Muppet but he's very kind) agreed we needed an MRI to see what was going on.

Then the shut down happened and I could not get an MRI.

So we waited...and waited...and then waited until it was time for a CT so that if we needed to do surgery we could see what El Diablo was up to.

The scan revealed the trouble but then I was in the hospital with the fever...and then recovering...and just starting back on my much needed chemo drugs and I wanted a few rounds in me before doing any surgery and then I had to wait 3 weeks to get in to see him.

It's been a long wait to deal with this and it is getting worse. When I was on the massive steroids I was not in pain from it but once they wore off the pain doubled down.

So now I stay locked in my house due to COVID-19, I need a walker to get around most of the time and I am just waiting on this damn wound to heal up.

 Plus the knee...but the poor knee still needs to wait...one day it's just gonna give out on me and that will be it...it's so bone on bone I can feel it...and my last round of gel shots did nothing because the chemo ate it up...but I'm going to try it again...

So it looks like in November (if the wound heals) Dr Muppet and I will meet in the OR once again. 

I have had surgery in November 3 times since 2016 so why not keep tradition. 

November 2016---hysterectomy to remove cancer

November 2017---hernia repair

November 2019---second spinal fusion

November 2020---possible 3rd spinal fusion

(in 2018 I decided to shake things up and had surgery in April...that was the first spinal fusion).

And yes, I acknowledge that it is a lot of surgery...spinal fusion surgery is horrific pain so I am really not looking forward to having to do it again.

I don't really have any wisdom gained from all of this---except that you need to set a timer on your phone when you are in the hospital or you might miss dinner or perhaps avoiding fish is while in the hospital is a good idea or maybe that we all need to keep thermometers around that read farenheit...

I do know that I am being cared for by the best medical team there is and that the nurses I had in the hospital absolutely rocked and my poor doctors still don't have a clue why it all happened but they have me back to being (relatively) healthy---other than the wound and my spine and knee issues. 

And a little issue of cancer. 

My body is really responding well to the chemo treatments so that is what is keeping me going.

It was not easy being in the hospital alone...and I have had several friends who have had to do so during this time of COVID and it is a very lonely experience to not have a loved one there to advocate for you or to bring you things if you need them. I very much missed having Aunt Jane there to hear things and ask questions and she's always super helpful at getting me water so the nurses don't have to all the time. 

And when I had my breakdown that morning it was such a feeling of loss of control and once again cancer robbing me of being "normal". I'm blessed I had a nurse who saw I was falling apart and needed help. I had tried to be brave in front of the doctors but when the reality of the situation hit me it was too much to bear so I am grateful that Jeanna came in and knew I needed some support. I feel bad for other patients who aren't as lucky or for those who can't speak for themselves.

I've survived a lot...and I will survive this...and with God's grace my body will continue to respond to the immunotherapy and chemo pills and my wound will heal and I will get my spine fixed before I damage it even more.

Cancer is a roller coaster...and trust me I want off this ride...

Inspiration Song: "Fever" by Peggy Lee...because no one sings it better...

Bye Darlings...this took me forever to finish...but there was so much to include. Thank you for reading this through because I know it was a lot. Next blog will hopefully be less of a mess...






Monday, May 25, 2020

Summer Breeze

Hi Darlings,

This blog is a little different...I hope you like it...

I'm laying in a lounge chair in my backyard...it's Memorial Day 2020 and my mind wants to drift back to a time when life was so much simpler.

The sun is going down and there is a breeze stirring up the trees and blowing the scent of the Carolina Jasmine around in the air. It's a large unkempt bush that I refuse to chop down even though it doesn't put out many blooms but those that do still perfume the air.

I see a little squirrel running about in the branches of a tree hanging over from my neighbors yard and nearby two blue jays are having a quarrel while the peacocks that roam the neighborhood shriek and scream in the distance. A fat bumble bee flies at me and nearly gets caught in my hair it's buzz as loud as a saw as I shake it out.

I lay back and close my eyes and set my phone to play songs from my childhood summers...1976 to be exact...a time before my father chose to spend time with another woman and leave our family. A woman who never liked or accepted me and tormented me for years but is now in my past. She's mother to one of my brothers and two of my sisters but to me---nothing.

A song comes on that transports me to my childhood bedroom. It's painted lavender and soft green with a long shag carpet and my camp trump stands open at the end of one of my two canopy beds. The trunk is slowly being filled with whatever I need for camp along with whatever fun things I want to take that I might just want. And lots of stationery...because back then we wrote letters...

I want to go back to camp.

I sip on my Kool Aid since today, in 2020, I am fighting cancer and need to hydrate for the chemo to come. But the taste of the grape, sweet and sugary in my mouth, makes me think of "canteen" time at camp.

I picture my camp friends and counselors...my beloved Camp Director Julie standing on the porch of the "Big House" before we snake inside to load our trays with food that in my memory---was delicious. I can almost taste the strawberry cake, the Hunter's Stew (which I am pretty sure was just Dinty Moore but it tasted better after having sat on a campfire), the sweet tea we drank by the gallons, the pizza cut in squares like at school and most of all the beloved Brownie Pudding that was sure to make all of us sugared up good but could also get us to behave in every possible way since we knew it was a treasured treat.

I hear the sweet voices as we sing our goodnight songs before heading back to cabins to shower and sleep with no air conditioning but the breeze through the screen doors and the whirring box fans (which to this day will lull me to sleep) kept us cool.

I was always on a bottom bunk so each morning I would sit up and get my hair caught in the springs of the bunk above me...woken by the clanging bell that started our days at the best place on earth.

I wish I could stand in the creek once more and feel the icy water rush past me as I hear the sounds of the guns cracking from the rifle range...and wave to the other cabin of girls as they ride past on horses for a trail ride---something I loathed but put up with at camp. I never was good at riding like my sisters and brother were...they loved it...I...survived it.

The peacocks scream again and I am transported back to the 70's and summer on the King Ranch...peacocks roamed the grounds and screamed constantly.

Memories flood back of Cousin Camp where I was forced to ride each day but did so just so I could do things all day with my beloved cousin Henrietta. I waited all year to get to be with her, and CeCe, and Sarah, and Anne Marie, and of course my cousins Mike, Linda, Jamie and Martin who would toss me across the pool like I was a ball.

Cousin Camp was as glorious as sleepaway camp...but in some ways better because we were all family. It was a week I lived for as a child and I mourned the loss of it more than I mourned my parent's divorce. Because of my father leaving the ranch we were no longer allowed to go back and I regret that my children never knew how much fun an impromptu dance party in the pool house could be. Or what it was like to have a pie fight and hear my aunts yell at us not to jump into the pool---which we did anyway. Or to just push the merry go round as fast as we could to see how long we could hold on. Simple pleasures.

I wish I could return to Kings Inn with my cousins or our dear family friends the Canales family and dance to the juke box while stuffing ourselves with shrimp and tartar sauce.

My memories of camp and Kings Inn give way to what Memorial Day would have been back then.

Music on the jukebox plays (mostly Eagles and Abba and Fleetwood Mac) as we swim for so many hours our toes would bleed from bouncing on the bottom of the pool. I can hear my father's laugh and my mother directing where the food should be and asking Peyton to take charge of the grilling as my dad tended to get to talking and burn things.

I see my parent's friends fanned out around the pool---some smoking and having a beer, others bouncing a baby in the water, the dogs running about and trying to jump in. My little sister Katie is in the "baby pool"---a place she was so comfortable in that she would often sneak out of the house, remove her diaper, and sit in the pool with a dog on either side of her. My sister Susan is a baby and is in her outdoor bassinet in the shade of the pool house and my friends, sisters and I try to boss the younger kids around and keep them from joining us in the bigger part of the pool.

The memories are jolted away by the sound of my air conditioner kicking on loudly and whirring as it cools my house.

My house.

It feels like 5 minutes ago I was in Kingsville in my backyard in the pool with a camp trunk waiting to be closed and instead I am alone in my own backyard in a lounge chair I bought in a house that is mine alone.

It's 2020 and my kids are in their own places and their father is now spending time with another woman (with my blessing).

And there is a pandemic.

And I'm alone...and a bit lonely but at peace with the lonliness.

I change my playlist to 1982 and remember that May so long ago.

I remember my graduation...praying my parents would be nice to each other and just give me one night where I didn't have to listen to one complain about the other. I solved that for my own children by placing myself somewhere else in the stadium than where their father was sitting.

I remember sitting in the chairs with my hair curled just so in my very hot graduation gown and my cap perfectly placed on my head so as to show off those curls. I sat next to John and we entertained each other during the ceremony and I remember looking at him thinking he might just be the nicest boy I had ever met and I knew he was going to accomplish things. He did.

We had a party at our house where my friend Kris and I made the worlds worst margaritas and my friends who dared to jump into the pool were shocked by how freezing it was. But it was a fun party.

And now back in 2020 I think of my friend's kids who will not get to sit on a track in a hot polyester graduation gown with a cap perched just so on their heads...or if they do it won't be the same as it was when I was young...or even last year. And they might not have a boy as sweet as John was sitting next to them.

My mind then drifts to Memorial Day about 2008 when camp trunks are sitting open in two bedrooms in my old house. It's 3 years before I will leave my ex and the washing machine is broken as I am trying to wash all the camp stuff before packing it. My daughter has just finished 8th grade and my son will be moving on to middle school. We lazily swim in our backyard pool and discuss what needs to go into the trunks and I am disappointed that my daughter doesn't have the same excitement about camp that I did but my son is fully ready to get to his camp and spend 28 days just being a boy.

And then I remember the last summer I had in that house. The kids and I floating in the pool most evenings before dinner...time that was so precious because we would swim and talk and laugh. And I knew that in a moment they would be gone...

I open my eyes and watch the squirrel a bit more...and a lizard who seems to be desperately trying to find a girlfriend. He bubbles out his little red throat bubble and scurries around but I don't see any lady friends around for him to attract so maybe he's doing it for me.

The air conditioner has quieted again and I say a prayer for my friends who are in the hospital battling COVID. They are a dear married couple who have already had a hellish year because their house burned down (killing all their fur babies) and their daughter is one of my seniors. He is in one unit recovering while she is in mid-battle in another unit of the same hospital. She tells me that the nurses relay messages between the two of them and my heart breaks that this is how their daughter's senior year is ending. This is not how Memorial Day should be for them or any of us.

I look down at my raggedy nails and long for a manicure but my doctor warns me that I am at too high a risk because of my cancer. So they will look awful for a while longer.

My hair, once so bleached blonde from hours in a swimming pool as a child (and sometimes green thanks to that same pool) now needs Sun-In (yeah I am old school) to lighten the roots. My hair is not the shiny platinum of my youth but is now a brassy golden blonde that could really use a cut.

But no one is seeing me and I'm not allowed to go out to eat or shop so who cares what my hair is like. Besides it is always residing in a pony tail atop my head.

I'm stuck in my house...or in my backyard.

But as I feel the sun getting lower and decide to move inside and write this all down before it leaves my head I feel gratitude...

I had a great childhood despite some hiccups along the way.

I didn't have a great marriage but I have wonderful memories of my own kids when they were young and we enjoyed the summer together or when I packed them up to go to their own camp.

I worry for my friends but am grateful they are responding to treatment and I pray that I will not be texting any other people I love in the hospital.

I stand up and my nerve that is pinched in my left leg reminds me that my body is damaged and standing is not as easy as it was last summer...before the second spinal fusion.

I take a few last sips of my Kool Aid and make my way inside to fill my glass again lest I have an oncologist fuss at me for my creatinine levels once more. I head to my shower to wash off the sun and the sweat just as the katydids start to sing their songs...visions of summer's past blowing through my mind.

Summer has started...what memories are there to be made in a year of a pandemic?

Only August knows...

Inspiration Song: "Summer Breeze" by Seals and Crofts...because the summer breeze reminds me that once again we will all feel fine....

Bye Darlings...I hope you enjoyed my reverie...and maybe it reminded you of the summers of your past...and let's pray for the one that is before us...and please pray for my friends and all the sweet seniors who have had their school year end this way...









Wednesday, May 6, 2020

Times Like These


Hello Darlings...

(This is not a "cancer" blog...we don't need that right now...I'm ok and the Keytruda/Lenvima seems to be working...we are balancing my dying thyroid and I had the sinus infection from hell that caused me not only to have hives but also severe gut issues and an allergy to penicillin...it's been super fun! Ok enough about that...)

well well well...

I don't think anyone could have ever imagined we would be in a global pandemic locked in our houses, did we?

I mean if you had said to ANY of us:

"Spring Break will end in disaster and you will end up locked in your house for months at a time and Texas will allow restaurants to serve alcoholic drinks to go and the irony will be that Cinco de Mayo will be ruined by a virus called Corona"

"oh....and there will be something about hornets..."

Well we would have laughed and said "try better at a joke".

But this is no joke...

Over these last many weeks (I have lost count since I have been locked inside since early March) I have had so much time to think about all of this...and thankfully it has let me work through some stuff.

So
Much
Time

I've learned a lot...

I bet we all have...
and if you haven't learned something from this...well...

honestly how the hell are you functioning because there is no way to have been dealing with this unscathed or without some lessons...or learning what Tik Tok is...

hell if I can learn to bake banana bread surely most people have learned something about themselves or at least tried a Pioneer Woman recipe

And can we discuss the lack of washing our hair?

On second thought...maybe not...

I've literally gone nuts inside my house so I am blessed that Aunt Jane is letting me have the use of her spin bike so that I don't start glittering items in my home as a way to deal with stress.

And thankfully my beloved Revolution has virtual classes so I can ride with my people and cry when I see their beautiful faces on my computer screen (full disclosure I have actually watched a yoga class just so I can hear the beautiful Aussie voice of my HeavenlySkye).

One would think I have gotten all kinds of things done...

One would be WRONG

Oh I have perfected my bourbonrita and I am a wiz at making one chicken last for many more meals than I thought possible and yes I attempted banana bread but otherwise I have been lazy and/or dealing with feeling like crap because of the meds I am on to battle El Diablo.

For the first time in over 30 years I have bare nails and I will not comment on my feet.

My skin looks great because I have only put on makeup maybe 4 times in 8 weeks (for doctor's appointments and chemo) and I'm drinking all the water water water...

I've also had some sleeping issues which I am sure more than a few of you have also had. Mine seem to be induced by my thyroid issue but I also think a layer of stress is on me that I am not acknowledging. I have discovered that if I turn on BBC America and they are showing one of the 423 Planet Earth documentaries that the soothing sound of Sir Richard Attenborough's voice does seem to help me drift off...and I have learned a lot about the mating habits of birds in Madagascar and New Guinea (look up Bowerbirds...no seriously look them up...really cute...not gonna tell you why so you have to look on Wikipedia).

I've started and stopped more streaming series than I care to list but I will give you:

Hollywood (just started...excellent)
Little Fires Everywhere (about halfway through...really good just other things to watch)
The Morning Show (soooo good)
Unorthodox (beautiful and enlightening)
We're Here (watching as each episode is doled out by HBO...compassionate and beautiful)
Ugly Delicious (when I don't want to think)
Alta Mar (subtitled but oh the costumes...as it was described to me: Clue on the Titanic)
Dr Thorne (lovely...just lovely)

I tend to go for happy sweet shows or anything with Reese in it (and yes I have watched Legally Blonde at least twice) and I am always always in for a costume drama (Belgravia anyone?)

So we are all washing our hair less (did I mention that I wish I had stock in dry shampoo?) and washing our hands a lot more and spending our time watching Netflix and not wearing bras or real clothes...

So how many Pioneer Woman recipes have you tried? I tend to cook like her so to me it's like watching myself cook...

And I have remembered that I don't enjoy baking (although I have loved looking at the pictures of my friends' efforts on social media and I am jealous).

Margaritas to go is something that better remain in place after quarantine is lifted because I am safer drinking a Club No Minor purple margarita at home than I am while at the restaurant. Plus I'm the only one who has to put up with me AFTER said margarita...

Now raise your hand if you have taken scissors to your own head or put on some form of color on that may or may not have left you with hair that was not quite the shade you were going for...yeah I see you...I took off a few inches the other day and I rediscovered Sun-In (which mercifully took my roots away and has not left me looking like I had an accident with peroxide).

I flirted with the idea of dying it pink, or putting in a pink streak, or doing a dip dye thing and then I realized I didn't want to risk ruining my hair and that I am 55 and maybe I need to behave...so I bought clip in streaks instead and that way I can have pink when I want it...

I had a sad little moment when my last acrylic nail popped off...and I found myself buying nail polish on Amazon that will hopefully grace my nails sometime before June...or July...or August...(polish will not stay on my naked nails...I have to have 1988 style acrylic for it to work lol)

Speaking of Amazon who has "sad shopped"?

What is "sad shopping"?

self explanatory---it's shopping while sad...which is not to be confused with drug or drunk shopping.

Sad shopping yields things like blow up swimming pools or Adirondack chairs or a color balancing hair treatment (see above with the hair stuff)...and yes all 3 of those were or are about to be something I am purchasing...guess which 2 are already paid for?

Drunk or drug shopping is a whole other thing...

I shall explain:

in 2018 when I had the first spinal fusion surgery I was on a good deal of morphine...a very good deal of morphine...because it HURT LIKE NO PAIN I HAD BEFORE NOT EVEN CHILDBIRTH.

So there I was hopped up on morphine and at 1:30 in the morning I'm channel surfing while I am recovering in Memorial Hermann and I find QVC and...well...

let's just say things came to my house that I had no idea I had ordered...I had even received emails about them but in my drugged state I just deleted...

I ended up with:
a fabulous primer
a dress that I always get compliments on
a new eye shadow pallette that I use all the time
and
yoga pants

by some miracle I seem to do better shopping on morphine than I usually do while sober but I will tell you the surprise of all of these boxes appearing at my door threw me for a loop...the yoga pants was normal...

So mercifully I have avoided drunk shopping during quarantine because I have not gotten drunk and I don't do drugs unless I am recovering from surgery and then those drugs are the serious scary stuff...

and the last time I was in the hospital I noticed that they had taken QVC off the channel lineup...

I'm betting I wasn't the only one who had a mysterious dress show up...just sayin....

But I do think we might all succomb to quarantine shopping...

and let's see how many of you have bought things off Facebook or Instagram ads...(I will be raising my hand here...at least twice)

I will not make you raise your hand if you have hoarded the Charmin but honestly people are you sure you needed all of that lifetime supply? I'm sure none of my friends have but I am sure some of you saw *that woman* in the HEB who had a basketful of Cottonelle and all the Clorox wipes who was unapologetic about it.

I am unable to go into HEB (or any store for that matter) so I have not witnessed this craziness firsthand but I have heard about it on FB.

Instead I have to depend on curbside delivery as my doctors have basically told me that I have the immune system of a newborn and I better not mess it up or test it...I tend to get texts from one of my doctors that end in exclamation !!!!! points to make sure I understand I am under no circumstances allowed out in public. I'm not even gonna ask her if I can get a pedi or hair done and I already can imagine the 8 !!!!!!!! that will accompany the "no" if I ask her if I can go spin...

So I am grateful to curbside delivery to keep me stocked up with chicken and the worlds biggest spaghetti squash (that will get tackled this weekend) and I sadly can't seem to get goat cheese (but I found a new source). And yes those magical margaritas I mentioned...(seriously people if you haven't tried a purple El Patio margarita now is the time when you are safe at home...I recall I almost left the ex early on in marriage thanks to the blue ones from there).

Right now my favorite game is seeing how long I can make one chicken last after boiling it (so far I have had a chicken salad, chicken tacos, and have 3 quarts of liquid gold chicken stock that is so rich it is practically gelatin). I also like to see how long I can go between curbside visits and to use all my groceries wisely...and I have learned that I really really like to use cilantro and onions...

When all of this started I had GOALS:
I was going to blog a lot
I was going to organize my closet
I was going to hang the pictures I have never bothered to hang
I was going to learn to bake things
I was going to organize and start using my study(instead of it just being the cat box room)

Zero of that happened...and this is my first blog in months...

But what I have learned is some grace for myself and my fellow man through all of this...

I had a silly fight with an old friend when this started and I'm happy to say we reconnected better than ever once we both simmered down (I'm gonna throw myself under the bus for that one).

I have learned that just because I can handle things a certain way doesn't mean others can

I will not judge those who want to "get out" and those who want to "stay in"...everyone deserves to be as in control of that as they are over their own bodies...

I do not have to "make things happen" at home and if I can just manage a day that I don't cry I am calling it a good one.

I am so grateful to God, Jesus and the Holy Ghost that I am not married to the ex during this and that my kids are grown and I'm not having to tell someone to do their calculus or read that book...

My ex and I would have killed each other...seriously we would have been on the 10 o'clock news and guess which one of us would have been holding the gun?

My cats are completely annoyed that I am home so much...Angel finds that I am in her way although Dragon loves that there are more meals he can try and steal from.

I have learned that I can do with a lot less than I thought (especially grocery wise).

I don't miss putting on makeup so now I take these awful selfies with a bare face and no filters...but it has made me realize that I feel braver and more beautiful that way. I have always been one not to take a photo unless it looked good until a few years ago when I started at Revolution and sweaty selfies became a thing. My current social media profile pic is me with terrible hair and no makeup in the sun. Something I would never have done a year ago but now I'm feeling like I want to be me and not hide behind a veil of something. And I don't judge those who do but for me the challenge lately has been to find the love and self acceptance of myself AS I AM. (and there is more to that but it is for another blog).

I have a lot of beauty products...let me rephrase that: I have far too many beauty products...so I have been trying to use them to make my skin/hair/teeth/nails look better even if all I do is take selfies with no makeup/no filters. I scared the beejeezus out of my daughter the other day when she came by and found me with a sheet mask on and it scared her...her words: good one, Mom.

And do we even know what day it is?

I just call every day "DAY" now...there is no distinction...Monday can also be Wednesday.

I used to mark my days with my workouts but now that is gone too...I just fire up a class on my computer and get on the bike and take my punishment (and have fun) but it's no longer "Mel Monday" or "Ethan Sunday Service"...every day is just everyday...

Today it is Day and tomorrow it will be Day...

I'm blessed that I don't have to work remotely and show up and look good on a zoom call.

Oh...yes...ZOOM...

Now for me when I used to think of the word "Zoom" it conjured up a 70's public television show that featured kids doing (what I thought were) cool things like cooking and making crafts.

I learned to make my own play dough from that show.

And cook cinnamon toast.

And do Bernadette's magical arm thing...now that was some witchcraft right there until she showed us how she did it.

THAT'S what Zoom means to me...now it means that my friends mostly end up looking at me with a glare behind me from my lamp while they look mostly up my nose and see me once again with no makeup and hair that has only flirted with washing...

But I have loved that it has let me connect to a group of my close friends and we all have a virtual happy hour once a week so we can catch up, sing together, laugh and generally not feel so alone.

During those calls we have witnessed a haircut, played games, broke into song many many times, shared recipes, had birthday parties, and no one has turned themselves into a potato on screen.

Another thing (on a positive note) that I have noticed is that my neighbors are all being so "neighborly".

I live in a very stereotypical suburban neighborhood full of houses built in the late 60's and 70's with a few new ones sprinkled in where we have mature trees and a strong neighborhood association. I love driving through and seeing families out on walks and bike rides and neighbors sitting in their FRONT yards to talk across driveways.

Today I caught up with my neighbors across the street who have little ones...I love seeing their children playing outside. We were waiting to see the Blue Angels but alas the trees here prevented us from getting a good look. But I feel like that wasn't my purpose of sitting outside today---it was so I could meet these two PRECIOUS young moms and make new friends. I also got to meet the couple behind me who have this great fun dog and a cat (named Mayhem which is probably the best cat name ever) who likes to go for walks with the dog and his humans. So no fun jets but a good excuse to catch up with the people who surround me...

I've tried to support friends who have restaurants by ordering from them along with my own attempts at what I call "Quarantine Cuisine" and I pray all my friends with small businesses are able to stay in business once the worst of this passes us.

And now apparently we have to worry about "Murder Hornets" which honestly I felt like I needed to look in the Bible for because that sounds right up there with a plague of locusts.

Time passes differently these days...I sit outside in my back yard and get some sun to feel it on my skin, I ride my spin bike to feel stronger and I miss being with my students and people.

I feel so bad for my seniors and my friends' kids who are seniors...no prom, no last performances, and possibly no graduation---at least for a while. Those things are important.

But so is the time they have gained with their families as they are locked in together in their homes, apartments, townhouses and yards...

I miss hugging my students and hearing their silly jokes...or what happened in math class...or drying tears after a breakup.

I miss those precious moments of CONNECTING...zoom calls happen, texts happen, but nothing beats getting to hug one of them with love and pride...

I miss hugging people in general...

I'm a hugger...and it is HARD on ya girl here not to hug...

the other day at chemo my nurse Amshaa and I said to hell with it and hugged...for me it is normal to hug my angel nurses and it hurts not to wrap my arms around them...my nurse Ivy held my hand the other day after telling me my CA125 was still in normal range...I cried and just needed to connect with relief.

Being alone in a pandemic is LONELY y'all...

but it also has taught me to appreciate the moments I am not alone even more...be it with my kids...or a zoom birthday party...or a text exchange with a student...or sitting in my driveway talking to my neighbors.

I'm buying some adirondack chairs to put in my front yard.

For the 6 years I have lived here I have hidden in my back yard when I went outside. But now I will sit in the front in my new chair and enjoy a bubbly water while I watch the kids play outside and visit with my neighbors.

I can't easily walk up and down the street but it will be nice just to say hello on a day when going to Walgreens might be my only excitement because I get to talk to the human at the drive through.

I've learned things about friendship during this time and today I was reminded of how I often think of my friendships as a giant garden...and I think now is a good time for us to be mindful of our gardens...

The succelents bloom away and don't need much tending...the roots of those friendships thrive without constant attention but if tended easily they thrive...

The flowers need more care and attention...those are our fun friends and they bloom for us and keep us bright and happy...

The trees are our sturdy shade...they are the ones who shelter us in our own storms and they have strong roots with us...they are our real and chosen families...some trees are strong oaks and some are evergreens and some are fruit who nurture us along with the shade...

There are vines in the garden that weave in and out to connect us to others...

there are vegetables that nourish us as well...they are the ones who feed our souls and keep us going....

and yes, there are weeds...I have pulled out more than a few of those lately...

So each day while I am alone I know that I have a garden of love out in the world that I need to tend and it will give me back great love and pleasure...

I hope all of you are safe in this crazy storm of illness...I pray you are all healthy and learning things but also have the grace to know that it is perfectly ok if you spend a day in bed with the covers over your head or binging on Real Housewives...

There are no rules here on how you have to be...other than wearing masks and washing hands...

I just wanted to check in...to make sure you all are doing ok...that the murder hornets aren't building nests in your faith that this will all end...

that it's ok if you don't bake sourdough bread...and it is great if you do...

that it's ok if you don't shower...but at least wash your hands...

that it's ok if you get a lot done...or nothing at all...

it's ok...

we will be ok...

and one day, after this has ended, we might all have a little more love and grace for each other...

because it is in times like these we learn to live and love again...

Inspiraton Song: Times Like These by the Foo Fighters (one of my favorite songs and bands...Dave Grohl is my biggest celebrity crush). There is a gorgeous new version from Live Lounge All Stars from BBC Radio. There words are perfect for this time...

Lyrics:

I, I'm a one way motorway
I'm the one that drives away
Then follows you back home
I, I'm a street light shining
I'm a wild light blinding bright
Burning off alone
It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again
I, I'm a new day rising
I'm a brand new sky
To hang the stars upon tonight
I am a little divided
Do I stay or run away
And leave it all behind?
It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again
It's times like these you learn to live again
It's times like these you give and give again
It's times
Source: LyricFind


Bye Darlings...stay safe...stay smart...find grace and forgiveness...there is no "right" way to do this so just find a way to live and learn and love...






Tuesday, April 14, 2020

Together Again

Hello Darlings...

it has been a long long while...and now we have this terrible viral plague going on...I want to blog about it---I finally feel ready but not quite ready tonight.

But instead I'm going to give you this...my mother's eulogy.

My mom died April 13, 2005.

It is hands down the worst day of my life.

Worse than getting told I have cancer...

worse than getting told I have to have chemo...

worse than getting told I have to have radiation...

worse than getting told my spine is in need of fusion (twice)

worse than getting told my spine most likely needs fusion because of radiation...

worse than getting told there is no cure for my kind of cancer

worse than getting told it is stage 4 cancer

worse than getting told the baby inside me had died

worse than getting told the baby inside me was growing in my tube (which is remarkably the only place I didn't have cancer...)

worse than even my precious Daddy dying because my Daddy was everything but my mom was...well she was everything.

That day my world stopped and has never been the same.

I often am sad and glad she isn't here to see me with the cancer. Sad because it would be nice to have her hold me and tell me it's ok...and glad she doesn't have to see me cry when I am terrified by what is happening to me.

So 15 years ago I lost her...and for a while I was lost myself.

Each year the hurt is a little less sharp but it is there nonetheless.

It pricks at me and prickles...it makes me feel the pain I felt when my crushed and shredded disk was making my spinal column hurt me to the point of screaming.

I miss her beauty...her laugh...her style...her organizational skills...her cooking...

and I miss her being with my kids.

And at this scary time I just want to call her and say "Mom is it gonna be ok?"

And I'm sure that holds true for so many of you.

So I'm gonna close this out with her eulogy...because it is the best thing I think I ever wrote. Because I wrote it at 4 am in a sleep deprived state of such deep grief that I know that the words could have only come from God.

And by the way...the sweet child at the end of the eulogy is a lovely young woman now who is headed to college in the fall...she has a deep heart for helping special needs kids and plans to make it her life's work...she is incredible and a blessing and I think God marked her as a very amazing young woman from the beginning...she was wise then and is still wise now...

So here my friends and those who loved her are the words I wrote 15 years ago to honor the life and legacy of the most beautiful woman I have ever met: Debbie Dembski Shelton

Today we honor my mother, celebrate her life, mourn her death, and rejoice that she continues to grow in Christ. I gave some thought about what to say, and if I even could say anything---for those of you who know me know that I am seldom unemotional and easily give in to tears. But I will try my best today to do this for my mother because I know she would want me to. And heaven knows, I do love an audience, especially a captive one…and we have full house today…

When I was trying to decide what to say, what message to give, how to best honor her, so many thoughts and ideas came to me. I could speak about her past and give you a boring history of her life…not that her life was boring, but rather just me droning on and on about what she did. We have been to life celebrations like that and about the time that the speaker gets to the high school years of the deceased, we are often nodding off. I also thought about telling you just about what a great daughter, mother, grandmother, sister, and friend she was---but we all know that about her. You couldn’t speak to her without her mentioning her children, grandchildren, or family. Many of you know us and our children by name even if you have never seen our faces because she talked so much about us.

I thought about sending you all a message of peace, love, and our resurrection through Jesus Christ, but I think Father John had that covered and did it much more eloquently and elegantly than I ever could.

So, after some thought and prayer, and talking with my Aunt Jane, and a hope that I will be doing the right thing, I have decided to ask you all to do some things to honor her. I think it is the right thing to do, and I hope you all will do these things in her honor and memory---and it will please her greatly.

Not to steal any thunder from David Letterman, but I would now like to present to you the 10 things you can do to honor Debbie. I will borrow from his style and count backwards down to one, ending with the 2 things she would think are the most important.

Number 10---Cook with butter! My mother was a fabulous cook…she learned from her father who was also a great cook. She rarely produced a dish that wasn’t incredible tasting. She ate a healthy diet and enjoyed good food, but when she cooked, she cooked with butter. Most of our holiday meals centered on her delicious food and she didn’t skimp on the good stuff. So when you do anything in life, and not just when you cook…don’t skimp on the good stuff…make everything you do full fat, whole hog, and ignore the calories.

Number 9--- travel first class and see this world. It’s not always feasible to fly first class, but why not give up some of those frequent flyer points and get to your destination in a little more comfort? My mother always tried to do that…and she was always more comfortable for doing so. She loved to travel. She loved to go and see my brother Beto and his family in Africa----it’s a magnificent country and she loved to be there. She loved New York City---we traveled twice there with Camiel but she made many trips there and she never tired of the city. She took ordinary vacations to ordinary places but she also loved to travel to exotic and fun places like Hawaii, Bermuda, Egypt, and Europe. Even when she visited my sister Katie and her family in Fort Worth she turned it into a vacation. She loved to go places---whether she was traveling with her children or with friends. We took so many fabulous trips together and I know that I will miss having her as my favorite traveling companion. So get out there and see this world…and send my mother a postcard in a prayer.

Number 8---Sleep on a lot of soft pillows. My mother’s bed was a soft, safe haven for my children and my sibling’s children…all the grandchildren have slept in Nona’s great big bed, surrounded by all of her soft pillows. Sometimes our entire family would pile into her bed. My mother had guest rooms but my sister Susan would always sleep in her bed when she came to visit because Mom’s bed was the best. Everyone who was at her house at some point would find themself lounging about on my mother’s bed. My mother made bed-making into an art form. Her pillows were soft and plentiful and her sheets were luxurious. But translating that to real life, what she did was to create comfort around herself. We can all honor her by splurging on the creature comforts in our home and create that safe, soft haven that welcomes us.

Number 7---take more pictures. My mother took more photos than anyone I knew---she also managed to display them all. If you were at the funeral home yesterday you saw just a smidgen of the photos she had. And if you were there yesterday I sincerely hope you saw the marvelous video that my Aunt Gayle put together with some of Mom’s photos. She loved photos of friends and family and usually had her photos to the developer within hours of taking them. Take photos and share them with everyone. There is no greater artwork in this world than the human face.

Number 6---Keep a clean house. I have failed miserably at this…she was such a tidy house keeper and I am nothing but a mess…never dirty, just messy. Her home was ready for “Better Homes and Gardens” to come and photograph it at any moment. When her father died she took on keeping the house to help my grandmother out when she went back to work. I was told a story about her neat-nick ways that makes me laugh. Back in the early 60’s, when my mother and her siblings were young, my Uncle Phil was home relaxing. Suddenly my Uncle Steve ran through the house yelling “Run for your lives!” and raced out of the house. My Uncle John soon followed suit and jumped out the window. The next thing that Phil saw was my mother making a mad dash through the house and she forced Phil, along with Jane, Gayle and the others, out of the house. When my grandmother came home she found 5 of her 6 children waiting on the front porch, locked out of the house. It seems that my mother had done her cleaning and they weren’t allowed back in---no matter what. Her housekeeping skills continued on to her adult life. She had a maid that had absolutely nothing to do. She threw out her clutter and kept things so organized. Her closet is a work of art. She never had to worry that her house wasn’t tidy enough for anyone to drop on by. Speaking of which, that brings up:

Number 5----Throw more parties! My mother was the hostess with the mostest. Martha Stewart had nothing on her. She gave great parties. She was the social director for whatever community she lived in. When I was young I can remember sitting with my sisters and brother and watching all of my Mom and Dad’s friends come in to the parties they gave. They had fabulous parties…costume parties, hunting parties, dancing parties, teas, casino parties, bridge parties and benefit parties. They entertained heads of state and heads of the school. We loved to watch her get dressed for a party and always were amazed that she could look so beautiful each and every time. Our home was the gathering place for the web of friends that she had in Kingsville. I remember Sunday afternoons spent with our family friends coming by---the kids stayed in the pool until we were long past the prune stage, the dads would stand around and drink beer until it was time to watch Peyton cook the burgers, and the moms would lay in their chairs sunning themselves while wearing curlers in the hair covered by a silly cap or bandana. Why those women lounged in the sun in hair curlers is beyond me, but I can still see that group of people at my house as if it was yesterday. She could even turn a hairdressing adventure into a party. In the early 70’s I remember her friends showing up, armed with home “frost your hair” kits, Lancer’s Rose wine, and cigarettes for those who smoked. The would seat themselves around my mother’s long vanity area and pull each other’s hair through the frosting caps…all the while yakking and drinking wine. As the evening wore on my sister Noel and I became hot commodities because we could pull the hair through the caps for them when they got a little too tipsy to do it right. They would emerge a few hours later, full of wine, full of fun, with head’s full of frosted hair---they all looked a little like Bea Arthur in her “Maude” days…and my mother was their queen. Those were some of the greatest times of my life, and I think my siblings will agree. Most of the best times were never a planned thing…it was just that everyone knew that our family and my mother would welcome everyone and no one had to put much thought to it. Have a party---we are, because she would want us to!

Number 4----Support education. It was so important to my mother that we got an education. I know the day my sister Sarita graduated was one of the proudest days of her life. My graduation from A&M was a triumph for both of us because she never went to college. Her siblings went to various universities and she was proud of their accomplishments. She tried to give us the best education possible. While in Kingsville she sent us to an amazing Episcopal school. When the time came to educate my own children I feel so blessed that I too found an amazing Episcopal school for my children. I use what she did for us as a blueprint for how to raise my own children and I was pleased that I can give such a wonderful educational gift to them. My mother loved going to St. Francis and seeing her grandchildren perform, or attending grandparent day, or even just picking them up in the carpool line. She so believed in the school that she participated in the school’s capital campaign and regularly gave to the Annual Giving program. But her dedication to good education didn’t stop with her grandchildren’s school----she gave scholarships to A&M, helped build on to our school when we were children, and she helped out with various projects at Texas A&I when she lived in Kingsville. So give to the school of your choice and support it well, she would really like that.

Number 3--- Drink more water and exercise more. Was there ever a time that we didn’t see her drinking water? She never ordered anything in a restaurant but water. She was a connoisseur of water and she drank it by the gallon. She always had a bottle of water and kept several pitchers of it in her fridge. It’s good for you and won’t interrupt your sleep…so toast her with your next glass and drink it more often. And get out there and work out! My mother loved to exercise…she was in amazing shape and she worked hard at it. She loved to walk with her friends in the morning and she also loved going to the Houstonian to work out. She enjoyed trying all kinds of classes but usually stuck to her walks with friends when the weather was nice. I know that she managed to get many of you out of the house to walk with her and I only wish she had made me do so more often with her---then I might fit into more of her gorgeous clothes! Take care of your health---she would want you to.

Number 2---Go to church. My mother loved coming to St. Michael’s. She loved this church and she loved the Catholic Church. She often walked to mass from her house so that she could exercise both her body and her spirit. She loved her faith and she clung to it. She loved Jesus, the Virgin Mary, and God. She prayed for all of us…so let us all remember her in our prayers and thank God for her life because He did such good work when he created her.

Number 1---love your family, spoil your children, but ridiculously spoil your grandchildren. My mother was the most beautiful and wonderful mother a person could have. She did the best she could after the divorce and I think we all turned out pretty well. But where she really shined was in the “grandmother department’. Nona, as the grandkids call her, was the best grandmother a child could have. She spoiled them rotten and loved them with the fiercest of loves. She taught them so many things and she could spend hours listing their virtues to anyone who would listen. She was devoted to her mother and she loved her brothers and sisters so very much. She was the oldest child and was their second mother since some of them are much younger than she was. Her family, children, siblings, and mother and grandchildren were the light in her life…and she was such a strong light in ours. We will all be a little dimmer without her to shine on.

In closing I want to finish with a story of how all of this got put into perspective for me. Over the last few days I have been told so many things and been given much sympathy and advice. But the true meaning of how I, and those of us who loved her, are to carry on were best expressed by Connally Dull. Connally is the sweet 3 year old daughter of my good friends Christy and John Dull. I left the Dulls, Connally, and her 2 sisters at my house to go and sign the papers to release my mother’s body to the funeral home. The Dulls said they would stay to answer the phone and the door while George and I were gone. When I stepped back into the house I began to cry once again. Connally looked up at me with her beautiful big eyes and opened her sweet mouth and said “Why you crying? Your mommy in HEAVEN!” I couldn’t have said it better myself…Sometimes it takes a child to put things in perspective.

I love you all…

Inspiration Song: "Together Again" by Janet Jackson...because some day I know I will be with my mother again when this life of mine is complete...the words always always always remind me of my mom...I just think of the word "Mommy" instead of "baby"

Lyrics
There are times
When I look above
And beyond
There are times when I feel your love
Around me baby
I'll never forget my baby
(I'll never forget you)
There are times when I look above and beyond
There are times when I feel your love around me baby
I'll never forget my baby
When I feel that I don't belong
Draw my strength
From the words when you said
Hey it's about you baby
Look deeper inside you baby
Dream about us together again
What I want us together again baby
I know we'll be together again cuz
Everywhere I go
Every smile I see
I know you are there
Smilin back at me
Dancin in moonlight
I know you are free
Cuz I can see your star
Shinin down on me
Good times we'll share again
(together again, ooh)
Makes me wanna dance
(together again, ooh)
Say it loud and proud
(together again, ooh)
All my love's for you
Always been a true angel to me
Now above
I can't wait for you to wrap your wings around me baby
Oooh wrap them around me baby
Sometimes hear you whisperin
No more pain
No worries will you ever see now baby
I'm so happy for my baby
Dream about us together again
What I want us together again baby
I know we'll be together again cuz
Everywhere I go
Every smile I see
I know you are there
Smilin back at me
Dancin in moonlight
I know you are free
Cuz I can see your star
Shinin down on me
Good times we'll share again
(together again, ooh)
Ooh it makes me wanna dance
(together again, ooh)
Say it loud and proud
(together again, ooh)
All my love's for you
There are times when I look above and beyond
There are times when I feel you smile upon me baby
I'll never forget my baby
What I'd give just to hold you close
As on earth
In heaven we will be together baby
Together again my baby
Everywhere I go
Every smile I see
I know you are there
Smilin back at me
Dancin in moonlight
I know you are free
Cuz I can see your star
Shinin down on me
Everywhere I go
Every smile I see
I know you are there
Smilin back at me
Dancin in moonlight
I know you are free
Cuz I can see your star
Shinin down on me

Bye Darlings...stay safe...and one day we will all be together again...both here and in heaven...

Sunday, February 16, 2020

Dare Me

Hello Darlings...

If you follow me on social media you know that in November things really went sideways for me...

so here's an update on what is going on in the land of #teamunicorn and how the last few months went down...and ironically all of this happened right at the 3 year anniversary of my cancer diagnosis...

So a few months ago I started to have some sciatica issues...I expected it and wasn't surprised when it happened but the pain was really bothering me and I got a bit worried...and as always I worried that it was El Diablo rearing his ugly head and so it scared me.

Because when you have cancer EVERY LITTLE THING makes you worry if it's not as it should be...

you get a sinus infection---you worry...

you have gut issues---you worry...

you get a headache---you worry...

you get sick---you worry...

you have pain---you really worry...

Last summer I battled a major kidney infection and several UTI's...plus the stuff with my back...but then I had a scan and it wasn't a "scare the crap out of me and the doc" scan so I thought I was in the clear. The kidney infection had cleared up and other than my back hurting a bit I was doing good...and I was really feeling strong in my yoga practice.

In fact I had found a renewed love for yoga...I was literally craving it and I would sometimes practice 2 hours a day if my schedule allowed me. I couldn't get enough yoga and each practice made me feel stronger and I was starting to find more balance and flexibility.

Yoga was doing my body some real good...

But then my foot blew up...

it went from a cute size 8 to a Bilbo Baggins hobbit foot over the course of a weekend...

seriously it was so big and fat I was waiting for it to sprout hair and I wondered if I could even get a shoe on it...

but I knew what was happening---lymphedema.

My poor lymph nodes that serve my left leg are the ones with cancer in them...and after 3 years of cancer and all the chemo I have poisoned them with they were tired...

and once you have lymphedema it is irreversible and incurable...you have it forever...it won't go away...

so lets add that to the list of things cancer and cancer treatment has taken from me or done to me:

complete hysterectomy
removal of several lymph nodes
hernia
weakened spine due to radiation
weight gain due to steroids
gut issues due to radiation
neuropathy in hands and feet due to chemo (they tingle non stop)
spinal fusion due to weakened spine
compromised immune system due to chemo
low hemoglobin due to chemo
low red blood cell count due to chemo
knees that are bone-on-bone and can't be fixed because I can't stop chemo
lymphedema in left leg due to chemo/cancer
slammed into menopause due to cancer
inablility to take HRT because of cancer
kidney issues due to chemo
sciatica

so yes---the fun addition to my health was not welcome...because lymphedema means that I will have to wear compression garments for the rest of my life.

I can't wait for August when I have to be in full compression tights...that's gonna be a lot of fun...

So I began therapy for the lymphedema (and had to drive to Sugarland for it since the location close to me was fully booked until December) and began the process of having to bandage my leg from toes to thigh each day and sleep like that and wear some sort of compression garment during the day.

And it's so fun when you are already hot at night to have a leg that has 4 layers of bandaging materials on it...

I'd had a scan November 11 and the results were---mixed...

but things didn't look too bad other than some lymph nodes growing and others shrinking. And there was some kidney stuff that I had no clue what it meant. The day I got the scan results I was at lymphedema therapy so my therapist and I did a little dance around the room in celebration...

but then while doing my therapy my therapist noticed that I was limping and having issues with my left hip.

I had noticed a weakening in my hip flexors in general but by early November I was really struggling to get into a bridge pose.

ding
ding
ding
ding

Congratulations Anice! You have been gifted with yet another medical issue...

I wrote it off but noticed that after yoga my back felt better but then it would get worse again...and finally on November 17 I had a day where I couldn't really get out of my chair...my back hurt...

so I did the sensible thing...

I went to yoga!

After class I went to my car and each step was excruciating...and it felt like my car was getting further and further away with each step.

I got home, unloaded my groceries I picked up, fixed dinner (all while having to sit down every 3 minutes) and cleaned the fish bowl...and when I finally collapsed into my bed after my shower I knew I was in trouble.

And dammit it was my birthday week.

I had all sorts of plans of special birthday spin classes and some very special yoga classes and a get together with some of my best girlfriends.

But with me when I make plans---

God
says
"Ha!"

So Monday the 18th of November I packed a bag with Aunt Jane's help (along with me having to literally crawl on the floor because I couldn't walk without horrific pain) and we headed to chemo...although I knew all along I was going into the hospital and not chemo.

I called Dr Rockstar's office and asked if a nurse could meet me with a wheelchair and when Sweet Jackie wheeled me into the cancer center all my peeps there knew I was in trouble.

When Dr Rockstar came into the exam room I told her "Happy 3 year anniversary! For your gift from me I give you a confusing scan and my inability to walk!!!!"

She didn't like her gift...

in fact she asked if she could return it...

I had planned to bring cupcakes and unicorn things and have a little party with her and Dr. Sweetmeds and my chemo nurses but my pesky back made that impossible---and she laughed that only me would think that being her patient for 3 years was a reason to celebrate but hey the woman is a goddess and amazing and she has kept me alive.

So she looked at me and said "no chemo for you! you are going across the street to the hospital!" and I told her I was one step ahead of her and my bag and pillow were in Jane's car because I knew things weren't right. And she was putting me on my favorite floor (yes, I have a favorite floor---I've been there enough) and with my favorite nurses (and yes I've been there enough that all my nurses know who I am).

The good news through all of this was that 8 weeks before my spine went out of whack the powers that be that decide such things had declared that Uterine cancer patients with certain types of tumors could now go on immunotherapy with Keytruda and a drug called Lenvina and that I qualified. She figured it was a good time to make the switch and Dr Sweetmeds was already working with my insurance company to provide me with the necessary drugs.

I honestly feel like this is the miracle I have been praying for...but at that time back in November my biggest challenge was to get my spine fixed.

Dr Rockstar called the neurosurgeon's office and they sent me across the street to the hospital, put me in a room and tried to get an iv started because they had to get me into the MRI with contrast and my port can't do that.

I warned the nurses I was a "hard stick" and they promised to get my port accessed ASAP but at that moment I had to get the iv in so he tried once on the left arm and the vein immediately blew (and it hurt).

They decided to go after my one good vein in the inside of my right elbow and got it to work. Not a great place for an iv but I wasn't willing for them to go poking at my hands at that point.

Into the MRI I went. The tech there remembered that I had been the woman who slept through the machine breaking down twice the year before with me in it completely asleep (thank you Adavan and Ambien).  This time I just had the Adavan (because I can't get into an MRI without it) and dozed while the machine banged away to reveal what was wrong...

Unbeknownst to me Dr Rockstar and Dr Spine were each thinking the other had a big problem on their hands---Rockstar felt it was my spine and Dr Spine thought it was cancer.

Rockstar won...or is it lost? In any case she was right and I was Dr Spine's problem at that point...

I had compressed my L4/L3 disk so much it had formed synovial cysts...and it was causing spinal stenosis and a lot of other problems mostly nerve related.

and all you need to know about that was that it meant spinal fusion surgery for me once again...

Color me very pissed off...

So they hooked me up with some pain meds and tried to schedule me for surgery for the next day.

I prepped for surgery, drank my Gatorade to keep me hydrated, ate a carb loaded dinner and got to know my wonderful nurse Ericka.

Woke up the next morning with my very favorite resident Dr Neurostunning (gorgeous and smart as hell and badass) gently shaking my arm to wake me to sign papers (and she had her #teamunicorn bracelet on for me!). Aunt Jane and I waited and when 3:00 came and I hadn't been taken down for surgery I knew I wasn't going to get cut on that day.

Dr Spine came and in and told me that we likely wouldn't get me to an OR until 8:00 pm that night.

He and I decided that we didn't like that plan.

So it was rescheduled for the next day.

Happy 55th birthday to me!

To make the day better they moved me into the Princess Suite on that floor and let me keep my nurses. I had a room large enough to throw a rave in...

Ericka came on shift and says:

"Girlfriend---where is your dinner tray?"

oops...I had forgotten to order dinner...

So Ericka being the goddess she is used her break time to go down to the cafeteria to get me dinner and more Gatorade (I had read that Gatorade helped your body prep better for surgery so I was chugging it).

I was really having a great big morphine pity party for myself that night because I had missed my birthday ride at Revolution with Marvelous Mel. Cried my eyes out when they sent a video of them singing "I wanna dance with somebody" for me...

and then I found out my friend's house burned down and they lost their pets.

At that point I stopped feeling sorry for myself and cried for them...

I had surgery the next day and I definitely plan to do something different next year on my birthday...because I do not recommend having your spine rebuilt as a birthday gift.

I woke up in recovery and did so well that my nurse was surprised (thank you Gatorade) and maybe it helped that I had relented about them giving me morphine...

I had amazing nurses while I was there...so many of them had cared for me previously that they feel like dear old friends. I got to have my favorite nurse Mimi care for me twice and sweet Lorena made my post surgical nights much better. Adam was my hero by accessing my port for me and making sure I felt loved and cared for and...well...I could go on and on but I'll just say that 3 Jones at Memorial Hermann has angels working there...

The next day my incredible doctors gave me a little birthday party in my room complete with Crave cupcakes and unicorn gifts lovingly selected by Dr Sweetmeds and her adorable daughter.

Read that again: my doctors gave me a birthday party...

I have the best doctors in the whole world...God put me with Dr Rockstar and Dr Sweetmeds because He knows I need attention...

and the nurses sang to me and honestly as awful as it was to be in a hospital recovering from having my spine fixed it wasn't the worst way to spend my birthday...

ok maybe it was the worst way to date but they made it much less awful than it could have been.

I can't say the same for the food there...

I had to stay several days recovering and the last night I was there sweet Chizo---my favorite Nurse Tech---came in and asked if I would like to have a bath.

Since I couldn't do it alone, and hadn't had a "good" bath since Wednesday morning I was very happy to accept her kind offer.

She lovingly bathed me in a way that I can only describe as the loving care one woman gives another...I cried with her kindness and the gentle way she made sure I stayed warm and clean. Sweet Elysee, the other nurse tech, came in and changed my bed and they helped me into a clean gown and brushed my hair and then tucked me in.

I cried after they turned off the light because I knew that that simple act of helping me bathe was more than just a bath. It was their way of saying "you are cared for" and it was so much better than the sponge bath I had the previous day. For a woman who usually bathes/showers twice a day it was very much desired.

I finally got out of the hospital after 6 days in and was so happy when Aunt Jane brought me home and Fabulous Vicki brought me my much craved for Popeye's fried chicken. The next day Aunt Jane and GOTTESS (aka Sistah Wife) helped me shower and changed my bandages and I got on to the healing and recovery part of the process.

The holidays came and went and thanks to family and friends I got to have my turkey, had friends trim my tree for me (that was a very fun night) and I got busy working on "Crazy For You" costumes since we had a show in early February.

And here I am 3 months later and I am still recovering.

The lymphedema still plagues me (and always will) but I now have a pump I use every night to help push the fluid through my body so that the leg doesn't swell up to elephant size. It swells some but sometimes it swells more and it hurts. But I am grateful for the pump...

I can't manage to bend over without holding on to something. My spine is weak and the simple act of picking something up from the ground or putting food in the cat's bowl results in me shaking and sometimes falling over.

I still need a walker to go any distance and I can't stand for very long.

My left leg is still suffering from nerve damage so I can't really pick it up or move it without my helping it. I can't step up on a curb or step on my left leg or my leg will buckle out from under me. The nerves are very very slowly trying to heal but this is taking so much longer than I planned.

I hate having to use a walker but these days I have no choice. I'm still a little unsteady and my right knee is so bone on bone that if I stand for more than a few minutes I pretty much can't walk after that. I desperately need a knee replacement. In fact I am pretty overdue for one but I can't because of the cancer and the need for chemo...

and speaking of chemo...

That miracle that I mentioned above? The Keytruda and Lenvima?

I AM ON IT NOW AND IT SEEMS TO BE HELPING!!!

I had a rough few weeks adjusting to the chemo pill (the Lenvima) and my blood pressure skyrocketed and caused me issues but we finally got me on a dosage that I can manage. Poor Dr Sweetmeds had to put up with endlessly texting me to make sure I was ok and not going to have a stroke from my blood pressure.  It makes me fatigued but I am used to that.

My CA125 was 150 when I went into the hospital in November and last week it was down to 40 after 2 months of Lenvima and 4 doses of Keytruda.

It is the miracle I have prayed for.

I will have a scan sometime in the next month or so and we will know more but for now Dr Rockstar and Dr Sweetmeds tell me I am doing better than they had hoped for so I think that is a good sign.

So even though I have been through a lot I am so grateful that my biggest issue---cancer---is being managed and maybe even have a chance at a longer life...

So there you go---that's what I have been through since November 17. And in the middle of all of it I spent 6 days a week for 6 weeks working on a show where my kids were incredible and I got to use some gorgeous costumes designed by my friend DesignerDee. Her work is so beautiful and it was an honor to get to use the costumes for my kids and they did her proud. I had a team of moms who helped me so much that I honestly could not have gotten it all on stage without their help. They were my angels...

And tomorrow, for the first time since November I am going to climb on a spin bike and ride.

I've missed getting to sweat and work out. I miss yoga so much it hurts but given my nerve damage and spine situation that might have to wait.

I'm scared shitless to get on that bike tomorrow.

I'm not even sure I can get on without help and I know I will need some help to get off.

But I'm going to do it.

Because I can't keep being afraid to try.

When I am confronted with a challenge I used to hide from it or avoid it as long as I could. But cancer has changed that and when a boulder is put in my path I just walk around it instead of stopping myself and giving up.

The other day I had lunch with a man who is like a father to me. He has watched me grow from being a spoiled teenager into the woman I am now. I told him that the girl he met when I was so young is so different from the woman I am today. Not just because I have grown up but mostly because that girl would have just cried and given up if she had to face the things that my grown up self has fought through.

Cancer has made me grow and appreciate things that I would not have appreciated even 5 years ago.

Cancer has robbed me of a lot.

But I have also gained so much.

And as hard as it has been to face this cancer the things I have gone through have toughened me but not made me hard to the world.

I'd have loved to have not had cancer. Or at least had a cancer that surgery alone had cured. Or surgery and radiation. Or surgery and a 6 round protocol of chemo had fixed. Or that chemo and radiation had gotten rid of.

But I have stage 4.

So all of that helped but didn't get rid of it.

But maybe, just maybe this new stuff will.

I am a pioneer with it. There are some women who have been in the trials and they are doing better. And some of the ladies who started when I did are showing great promise.

So maybe God is going to keep me here longer thanks to these drugs...

And God keeps giving me the challenges I keep facing as a way to show me that He is with me.

Because it is my faith that assures me each night when I take those pills that God has tempered me like fine chocolate.

When you temper something you improve the consistency, durability or hardness of a substance by heating and cooling it.

When you temper chocolate you heat it gently until it becomes smooth and glossy and by doing so you prevent it from the dullish appearance it can get and it gives it a better texture.

So I think of myself as some very fine dark chocolate---and with all I have gone through God is slowly warming me up to improve me. He stirs me and keeps me over a gentle simmer. And once I have reached the point He wants me at He will pour me out and I will be shiny and lovely.

And sometimes when tempering you have to continue to heat the chocolate until you get it to the right point.

I think now I have been through so much that maybe--just maybe--I might be ready to be poured out and will be silky and smooth and have a nice snap! (and sadly my "bend and snap" days might be behind me thanks to my spine...)

I know I have been through a lot but I also have friends who have greater challenges than me...friends who have lost their child...friends who have lost their partner...friends who have lost their home and fur babies...friends who have lost their life...

Me---I'm just a woman who has faced some challenges in the course of her life and those challenges have molded me into who I am.

Hell I am a damn chocolate unicorn and I am one of a kind...

So now when God puts me into the heat to smooth me out and I have to face things because of it I feel like asking if He is daring me to go further and try harder...

Because if I am the kind of woman who can have spinal fusion surgery and 2 months later fully costume a show with 63 kids I think I can do a lot more than I ever imagined I could do. It might have taken me borrowing things from a friend, using a walker and losing sleep but by golly I did what I needed to do.

There was a night I was so tired I forgot that my last name was no longer my married name (true story---I literally forgot one night that my last name was my maiden name now because I was so damn tired I could not think).

Make my knee so bad that I can't walk and I'll just use a walker...

Give me a new drug that makes me tired and messes with my blood pressure and I'll just swallow the pills and find strength inside myself to push on...

Fuse my spine and I'll just find a way to bend over anyway...

Because you see if you dare me I'll take you on...

Go ahead...dare me...

I've got my own strength and all of you...

I'll take it on and win...

every
damn
time

Inspiration Song: "Dare Me" by the Pointer Sisters...a longtime favorite and every time I am faced with a challenge I play it and sing along and I'm kinda hoping my bae ChampagneAndCycle will play it for me the next time he is inspiring me in class to go a little harder and faster on the bike...

lyrics:

I've got a chip on my shoulder with you name on it
Knock it off
So don't just stand there foolin' if you don't want it
Knock it off
I say you're either a lover or you are a liar
So don't you push too hard
You're playin' with fire
Baby, make your move
Step across the line
Touch me one more time
Come on, dare me
I want to take you on
I know I can't lose
I'll be loving you if you just dare me
Looks like you're lookin' for trouble
And I'd say you found it
You found it
You'll have to come right through me
There's no way around it
You found it
I hope that lean hungry look means what it's saying
'Cause I'm just sittin' on ready, ready and waiting
Baby, make your move
Step across the line
Touch me one more time
Come on, dare me
I want to take you on
I know I can't lose
I'll be loving you if you just dare me
Come on and dare me
Bye Darlings...I dare myself to take myself on...and I will win...