Sunday, September 15, 2013

The Healing MOvement

I met Mo, Portland based multimedia visual artist/photographer, in the summer of 2011. Mo sat on the floor while Butterfly braided her hair and told me stories of family, art, growing up, and her son, Monk. I was introduced to The Ancestors: rocks with faces that Mo had uncovered through paint. The following summer, I and some friends joined Mo at Roosevelt High School as she was putting the last touches on a mural she created for the school's Freedom Writers exhibit.  She let us tag the wall with our personal touches and even congratulated me on my newly discovered artistic capabilities *pops collar*. I found Mo to be an open, loving creative who wears herself on the surface of ways that even made me uncomfortable. I could never act around her. She'd see my pathetic attempts and call them out with compassion and quickness. For this, I am thankful.

Today, Mo is in the fight of her life. Diagnosed with stage 4 ovarian cancer, the prognosis is grim, yet her hopes, artistry, and integrity remain in tact. She is even continuing the Good Days/Bad Days project that she started 10 years ago, documenting every day of her experience through photographs and testimonials. Her willingness to be open and vulnerable during this time has not only showed me how to be a huemehn, but also how to be an artist. 
Speaking of art, Mo's creations are for sale. Your purchase goes toward The Healing MOvement. Click the images throughout this post to learn more about them. 

September 10, 2013: 8:16am
Sept 2013 Ovarian Cancer the next phase in my journey through this life. A central place to know about Events, access donation links share cancer info you would like to share with me, well wishes ...LOVE
Headed out to the Doc soon ..and then we'll know what there is to know.

So..the results it is as bad as I suspected borderline between Stage 3-4, wont truly know until they get in there and really look during surgery. On the 19th I will be returning to Portland..OHSU and they will do a total abdominal hysterectomy including the muscle & fat walls, possibly lymph nodes and sections of my bowels if found there...(the Doc seems to feel confident if we have to do so there will be enough left that I wont need a colostomy bag)..and anywhere else it might be hiding they cant see on the x-rays, ...they also did more blood work ekg and took chest xrays today...just in case....I can't even think about that too...after surgery I will be in the hospital for a week and then when I have recovered enough from that I begin combo of chemo .radiation and alternative medicine...without it ..I wouldn't see 2014

I spent the day with my family and my GrandDoodle they were all there to support me and each other..gave me the strength I needed to hear what is to come...with The Reason sitting next to me only thing I could do was choose to fight.

I'm not going to lie and make it sound like it will be easy...statistics are a low 30% chance ...and if it goes/stays in remission ...that might buy me 5 more years....5 being very optimistic.... ..many things can happen in 5 years though.

I have decided I am going to pre cut my hair ...accepting it MAKING IT part of my warrior MOde preparing for what is to come...and donate it to Locks of LOVE. Got to walk it the way I talk it....LOVE even in my worst MOments

I also intend to hit it hard with a cancer fighting diet starting right a few days ago...I'm on high protein drinks ...can't eat everythings smashed together...getting my strength up...but after food...the right foods can be very helpful and are very encouraged


To my foodies...often with chemo you loose your desire to eat foods taste different etc me concoct some delish cancer cuisine I cant resist
I am a Pescetarian/Vegetarian (seafood/vegis) with nightshade allergies NO tomatoes potatoes peppers eggplant pimentos tomatillo etc ) ...

Scheduled shows 2013: I am going to see if someone can sit in for me in scheduled upcoming shows ..if not for obvious reasons I will have to cancel. I am also going through my work cataloging it in more pulling ones I want saved for my family ...and would with dignity prefer to 1st be paid to be the artist I am Monk will handle packing and shipping ..if anyone knows my work ...its him.

it is my goal to be healthy again feb 2014 ...and have a huge celebration of LIFE in my usual Feb spot...and if I am is my hope then that you may gather there and celebrate MY life.

Rach a nurse has offered to come help here and there now and then to give my mom a break ...anyone else with med skills wants to help...most appreciated

Farnell mentioned a benefit concert...those interested in the idea him each other ...YES if thats the way the road turns..ANYTHING that helps my family in this time.

..I am an artist...going to be one until my last breath...I have been documenting myself for over a decade now, I feel for me continuing to do so will help me through the journey ..they will be raw...and they will be real.. as I experience this new will see a part of me you may have never known...know that before you choose to look at them PLEASE if you cant handle it ...don't look and DO not leave any negative BS... I hope that you can understand my need to continue my Good Days/Bad Days project even through these dark days...

***ANY research/recipes comments etc you find please share HERE and...we can all become healthier life/cancer aware experts through this journey

Know that the notes encouragement etc are also better for me ...and us all all in one place... spread out here there everywhere ...hard to follow stressful so much love I feel guilty not being able to answer all directly..please accept it is not personal ...know they are read by myself or those helping me..they are heart felt ...and woven into the strength that will help me and them..all of us who are brave enough to walk this path with me ..I thank you so much for that. .I LOVE YOU ALL and thank you SO much for all that you return to me.

September 11
While at the hospital getting the results we also picked up info on donating my hair ...I'm not comfortable donating to the one through the hospital because it is a corporate label/product 1st and the charitable part is on the side...those that know me know how anti label I am seems locks of LOVE is no longer working with the cancer association ..I'm looking into that and why? I would prefer to donate it to one that makes wigs for children so if anyone knows about others or would like to help me on the research end of that it would be beauty FULL ... LOVE

September 12
Woke up at 4ish couldn't go back to sleep....decided to watch the sunrise...then sat at the computer too long trying to act like every things normal ...didn't take my pain killers on time ..., paying for it now... The sunrise was beautiful though.

September 13
Tough night Monk hardly slept ... My poor baby and mother that they have to watch the generation between them go through this....I have friends visiting today hopefully it will give them both a break. Meds are making me fall out while typing this ..LOVE you all
As my Monk recently posted ... Life is short... Be centered in the present in recognizing the gift of each breath... If it hasn't where you are go outside and watch the sun set next time watch the rain see the beauty in it ...compliment a loved one or stranger... Eat something healthy for dinner... Spend a few moments a do a self check mental physical spiritual...often ....forgive trivial transgressions. Try not to judge work on your personal compassion for others worry less about competing with someone else and focus on being a better BEing then you were yesterday.., Be it music literature tv food etc ... Make sure that you only allow positive healing energy and substance into the temple of yourself ...#LOVE yourself and each others

September 15
The mind is willing... But the body is unable, this will not be a journey for the weak. I'm not going to go have a surgery and everything will be all better next week...I'm going to get cut open breastbone to pubic bone and then have every bit of cancerous tissue they can cut out of me removed along with a full hysterectomy lymph-nodes... slamming me into the menopause I thought I was starting early (the irony)...if I'm lucky I leave the hospital with a valve or plug in my side instead of a colostomy bag,.. over the next 3 weeks of healing from surgery ascites (fluid in my abdominal cavity) will most likely return.. they will then for the next six months repeatedly use that valve to pump me full of poison in hopes of killing the rest of the cancer surgery couldn't remove...and potentially my immune system ...minus the immune part that's the "if I'm lucky" version. I've been living with my mother working as her caretaker ... For the last year ... now suddenly she and my son are mine...while they put up a good front I can see it in their eyes every time they look at me. The pain they feel seeing mine ....My brother Gabriel Jones and I are writing my will discuss what I want done with my work..,personal remains. Because it needs to be done just in case

....he his wife family all have the same look in their eyes I have to find some kind of balance in all this ....fighting... but not being afraid...face the reality of possibilities ...this is the hardest thing I have ever had to do in my life... This time I will be literally fighting for it....My Life. I've stayed for the MOst part relatively strangely numb.., with random hysterical breakdowns....everything I just typed painfully sinking in over the last week... Feeling trapped inside a body no longer mine.., the brain races ahead the body breaks down... I've always tried to be the one who helped others ... And now I am the one needing the help... surgery to recovery could easily take over a year..My Mom Leslie Anne and my Monk Josh Jones will need all the help they can get just as much tomorrow as 6 months from now ...

please if willing connect with them and my brother and figure out how you can help... from laundry to bills to holding their hand while they cry...I ask too that any benefits now or later you might put together that you contact and include them as well. My mother Leslie is really having a hard time...a retired nurse she understands the medical terminology instantly and knows too many details...

I am her 1st born her 1st baby..and she being a cancer survivor herself ...she is tortured trying to face the reality of the pain I am going through what she knows I am about to experience... And that she may have to watch her child die. .... This healing MOvement will not be a journey for the weak those of you who do come help..will be dealing with the'll have to marinate on the reality of it all while deciding how you can help...I love you all SO much. I whole heartedly THANK YOU now for what you have all done so far and will do as this journey continues.....ALL of my LOVE"

September 16
K that part where I call you all extra.... SOOO serious about that ... Hospital mentioned it earlier... When I said family only call mom .. I meant right then for info needed ... Not to overwhelm her with tons of phone calls .., if you gotta ask should you come probably shouldn't .., but if my peoples wanna sit withy flesh and blood peoples ...,PLEASE DO... Just leave the extra combo platters at home people! Seriousness ... Love you ...bunch a'crazy ass artist poet musical type people ..bring if down easy now.
September 17
Trying to wrap my mind around the next stage. I think I can rock a baldy semi successfully ... #MOre so knowing I helped too.
September 19 9:23am (from Josh "Monk" Jones):
Just got the call from the doc. She has just started surgery and is doing good so far. Ill keep everyone updated!
Okay everyone. She is getting closed up right now. Should be in recovery room tommorow. Doctors say she prob won't be doing too much tonight but I will try to get certain folks phone calls. There is people first in line I'm sure you all understand. Were almost through this part of it though!!!!

September 23
YESTERDAY I've been unplugged from everything except oxygen and Meds been up walking 5 times used the big girl potty even ...

LAST NIGHT started to be rough until the clarity that I'm a night owl sitting too long ...position water retention etc..,
Had a great nurse who really put her soul into helping

September 26
Second Chemo Port...this one a smart port for blood tests etc added yesterday in my upper chest because my veins are too deep ...but it is also an be used for double wham chemo...
Home clothes smells...foods...and most of that disease out of doc seems to feel I have done so well she wants to talk about staring chemo in a week instead of 3..only part still really draggin me down is this water weight/cement pants I'm still trying to get off ...One step at a time.

The larger of the many cancer masses they took out of me ..hard to look at

"I will be stronger then I have ever been or thought I could....for her.
TODAY/ASAP what I got SCOLDED for and their right is trying / being social with family friends again sitting too long really leaving the brunt of the physical and emotional end of helping on josh ...he needs a break,a shower, and a hot meal that doesn't come out of Plaid pantries nuke it section... Please hit him up If you can help him with this ASAP LOVE

September 30
Staple come out today!

October 4
The only way to conquer... is to create.
 ~ Michael Crenshaw
WWFD? ...Need to get the lab in functional order so I can paint on days I feel well enough. I was in mid swirl when the big C decided to drop in and blow up all my plans. ..On average to be honest ..I don't feel sick ... Beat up lil but not SICK sick... And then I see the way people look at me... Or I try to move and the body can't do what the mind wants ... And finally ... I look at myself ... And I know there is no denying it ...I'm really SICK sick.. And I fluctuate back n forth between sad and anger/irritation...mainly selfish...WHY ME? But not really feeling fear until I'm faced with the "NOW"ness of the situation. Needles coming at me etc...

NOW ... What a packed word it is.

....I want<NEED
all my nows!
... All of them.

October 5
Hair today... Gone tomorrow. Monk cut my hair off today ready-ing myself for chemo. He did a great job loving and gentle made it so mama barely cried at all. LOVE YOU MONK Josh

October 8
Spent yesterday at the hospital being tested to see if I'm healed enough for chemo... loosing too much weight...railroad track runs down my belly now...not eating enough ...Spent today hairs gone.... life in general and not so general on cold turkey...out of sorts...this isn't me ..where am I ...weak barely can walk across the room.... let alone run away as fast as I can...... forcing myself to eat ..must get my protein up chemo's coming .. add ..everyone has questions wants answers, choices now now...calm down dont get all worked up... mass overwhelming me while individually not intending to .....I don't want to be rude but at the same time I want scream until my vocal cords bleed leave me alone for a minute ...cause apparently I have "cancer"..and I JUST. DO NOT. UNDERSTAND.

October 9
...the body wont ....but the mind still can.

October 15
It's not really the cancer that breaks you down... It's the side effects of and the "cures" ...I've been "online quiet" just trying to focus... Make it through "today"... ready myself for tomorrow. Can't really look to far past that. This pain riddled MOment is it.. With a blurry "maybe" just out of hands grasp. I can't relate to life as it dramatically different and yet simplified to some very raw quality of life basics ... Can we get any food in... Is waste coming many days has it been much pain "What is your pain level 1-10 ?" always floating in between the other questions. Trying to maintain some sense of positivity despite all that and the hormonal chemical reality of being gutted like a fish...because cancer by its self wasn't reason enough to feel emotionally hysterical ...days are centuries tar and feathered in pain layered in questions ...simple things taking forever... And in the same time precious MOment flying past...feeling wasted waiting... I think I'm going to cut off what's left of my hair today. Chemo starts Thursday.

October 17
Chemo day #1: after my checkup yesterday I was passed again but they changed my treatment plan to lighter but more frequent chemo 1..8....15....week off .. And then evaluate how I'm doing if we can increase dosage...still loosing too much weight.....not to bad so far....except the allergic reaction to the Taxol (sp) face/neck turned bright red couldn't breathe instant panic NOT A CUTE SCENE...with the panic I was ready to rip and run NOW: 15 min left on my second Chemo Carobplatin this second one has been a breeze comparatively 45 min compared to 2+ hrs on the Taxol... Tired... so far is as/and better then expected..LOVE

October 20
Not a lot to say right now ...the 1st 48 hrs wasn't too bad actually most likely because of the feel good cocktail they gave me before the chemo ....however....sicker then a dog last few days today I can barely keep water down...just want to curl up in a ball and cry...not a good day

October 23
Dr. Visit today to set my markers and get ready for chemo round 2 tomorrow ...truth..for the most part feelin pretty strong
October 24
Chemo round 2 ... Plugged in & oxygenated ...allergic reaction again.. Not cute but they, expecting it, caught before it was as bad as last time ...looks like treatment days are gonna be extra long ones.. Yay?!? ...not so much.

October 25
Just to remind me that this is cancer not a cake walk I was up all night hurling so bad my tum muscles ache still... This is only Round 2 ... I still have 5 months of this? My allergic reaction to the Taxol (1 of 2 chemo Meds they give me) .. And by allergic reaction I mean I turn bright red and stop breathing ... Messes up our plans for the once a month heavy dose of chemo we were planning for the next round and using the gut port they put in me because it's a fast gravity flush of chemo straight into the abdominal cavity and then they turn you every 20 min to make sure it "coats" every internal organ that had cancer on/in it... Patient needs to be breathing to really make that "work" ... Next fun thing they warned me to look forward to this week.. Probably going to loose all my hair...ALL of my hair. ...everywhere Not. So. Much. Grumpy today... Barfing for 10 hrs will often do that to ya though won't it. On a up note... I just farted ... Only in cancer/bowel surgery land is that a good thing. YAY for farting! ...Means my guts are finally catching up and trying to function again. Gonna lay here and whimper for a while. Love you all.

October 27
came back from the bathroom and found my blanket trying to freak me out
October 31
Night sweats body aches exhaustion insomnia tears...
Due to my allergic reactions to the chemo today ...postponed until tomorrow ..extra steroids right now and in the morning plus some other new drugs and we try tomorrow 8am instead...sooo not happy about the 8am ..nor the probably wont sleep tonight either..grumble grumble blah blah

November 1
Dear steroids, Thank you for letting me get a few hrs/zzz.. I would be more then happy to grab a few more from you ...but if not I'll also be grateful for what I got, they were much needed... My crankiness was starting to annoy myself.
Chemo round #3 wish me luck no allergic reaction ...breathing is alway a beautiful thing... So much steroids in me I'm talking a million miles a minute. #herewego #chemosucks

#LIKEABOSS ....done.....5 hrs problems "low n slow" was said so many times it's our new MOtto ...I am so amped up and tired right now I am probably already asleep but am too amped up to know if ...Humm feels like when the insomnia has me cause I need to paint ...had light bul bs over my head exploding like stadium lights I know the series now...I think it will be my bhm feb show focus.., if I start now I can use it to help pull myself through this... Signs so many signs right there if front of me I couldn't see/hear not dialed into the right frequency. #gottapainttobreathe
November 2
Returning to some normality ...I realized of the reasons I felt so out of sorts..."normally" ..I have music on 20 out of 24 hrs a day somewhere always on ...between the hospital stay and coming home...I forgot to turn it back on..and at times intentionally turned it off because the pain kept me from being able to enjoy it ...but I caught myself having a #minisolodancepartylite the other day...started crying when I realized it actually...I could finally kinda dance again..could "enjoy" MOving again ...#HUGE ...right here right now ..on random still steroid amped not over doing it ....but definitely doing it ...MUCH LOVE
...overloaded on the steroids still... I can't hold still been wide awake since 4 am in a cleaning frenzy ...currently working on getting the lab art ready...1st pic from a magazine i was reading during chemo me thinking about the big pink elephant thats always n the room since my diagnosis and then also ..2nd deep attraction to the hindu god Ganesha know as the remover of obstacles, the patron of arts and sciences and the deva of intellect and wisdom ( it around in brain batter figuring out how to smear him on a canvas contectively ...#gottapainttobreathe

November 3
Steroids have definitely worn off crashed early but been mostly awake since 2am painful cramps in my gut waking up feeling like your being stabbed & the knife is twisting...obviously not restful...said it before it's not the cancer that breaks you down it's the side affects of these damn "cures" ... Being slowly tortured on a maybe. Trying to remain positive but £@#%!!!
November 4
"You should be grateful for the time." ...time seems to be a repeating message much you your using it.... Or maybe I'm just very aware my expiration date got pushed visible closer. As fast as I many as I painted at a time ..over the years I always felt I was making up for lost time or felt there would never be enough ...truth I've been heard saying this before ...time is so short, and I had wasted so much time trying to "BE" for other people ..., while I'm laying here like this fighting cancer knowing for a fact that as you know it can be taken from you, reading your frustrations via timeline how much energy we give to the negative repeatedly... I feel the need to say to YOU: this is YOUR life... Live it for you WHY are you wasting it on "that"...step away remove yourself from it ....go do that thing you always wanted to do and do it for the joy of it without comparing it to anyone else... Go paint draw write run laugh dance fill your days with things you love ....#LIVE while you can.
November 6
Messed myself up today some...earlier I looked up Ovarian Cancer originally looking for more foods I can add to my diet that fight it and made the mistake of reading my "chances statistics blah blah " via the ACS (American Cancer Society)... For me stage lllc......35% .....been trying to keep it together head positive I've been behind some slim odds ..blasted statistics out of the universe before... its always possible...and so I put on music and was "OK" until...heard his voice ...before I could get to it to change it I listened to him... which made me look at the pictures ...I remember standing there outside his memorial with those folks ...our friends...even remember hearing myself say with intense passion ...we NEED to be doing what we are here to be doing it could be any one of us next. ...never even thinking I could be talking about myself.... Did I manifest this challenge?!?!... not being negative...but making myself face real..very good chance I will be seeing him before most of you do ....I CAN say I have been doing what I was put here to do...I DO feel like I #LIVED up to what I said ...I have always wanted a party when it comes..a celebrations with all my favs crying allowed...I suppose I'm going to have to talk to a few of you let you know... what for when...some will read that and think it means I'm not fighting ...those that know me just know I obsess over details and 360 angles that and..basically I'm a control freak when it comes to how I am represented lol...I like to see the whole at peace with the possibilities all ending up positive...I feel good that I have NO regrets re: my work, being an artist...I walk like I talk..and for years I have been painting myself with wings.

November 7
Nights are the hardest. Sometimes I cry just because I'm exhausted alone sore and there is no one there to hold me intimately, to allow me to emotionally tap out.. But as I watched the pain across partners faces last few chemo appointments I realized too I'm not putting another person through that emotional pain either... for "them" it's better I actually don't have a partner...there isn't someone laying next to me worrying wishing they could take my pain. If you do...if you are half of a couple....acknowledge them with a little extra just cause #LOVE someday they will really need it.
November 8
Been up since 4ish steroid twitchy... Gave me plenty of time to paint my face look lil more human... Headed to chemo #4 Monks going to stay the 6+ hrs with him mama today ...brought art stuff and bones with us #lowandslow #chemofriday Now that we are settling into a routine I've got thoughts for friends for the weekends (aka 1st couple days after chemo are the best...miss you guys kibble at the casa like some of us use to... Remember...#meMOrays) I'll concept share later... Just needed to feel as "comfortable" as I could with all this first update you soon ... #LOVE

November 14
...Thursday steroid day. Do I take them now and twitch all night...or try and take a nap wake up at midnight and take them then... I'm leaning toward the later they said as long as I have them in me by midnight for "Chemo Friday" ...and the steroid/Benadryl combo that makes me think I can Papa is taking me tomorrow doing the 6+ with me...lil snarkery for my musically inclined ...LOVE 15
Chemo Friday #5...sorry I didn't get this post in earlier ...I was awake since 2 am this morning ..the steroids had me ...just so you get the depth...I was in the kitchen baking ...(inside joke chuckles) making gingerbread cookies at 7 am...anyone really knows night owl me ...7 am normally I'm still staring at the back of my eyelids ...but everything's changed...everything...when this is over the person I was will no longer exist who I become and where that journey begins is still to be determined ..but it is MY intention that MANY years will be spent here discovering the new ME.

Chemo went really smooth no reaction I think we might be over that hump ..shorter session today forgot it was chemo lite aka only the Taxol so not the whole 6+..only 5 (Hey that hour+ is a million years with that ish pumping into your veins trapped in a chair)...while I am not taking any weeks off ..straight through ..we are running the 3 week cycles ...last week was heavy... today lite ...22nd will be lite too ...28th will be the ugly one again...

I cried a lot today ...but in the waiting room the treatment center I'm very young...and its apparently in my "favor" ..most everyone around me was really elderly today ...the tears were mainly for them ...listening to them there again ..3rd time back... chemo ..radiation ..poisons ..these are NOT Golden years. I learn my statistics ..that that whole 5 years is less about me living living and more about years of remission ...and then having to do this's to believing the next 5 yrs will find a cure ..cause I don't think I can do this again..its like willingly sitting down and letting someone shove bamboo skewers... under every one of your nails...every week ...lemme repeat willingly

I'm forgetting things now..chemo brain...about the only thing they forewarned me that would happen... that has happened ...not going to talk about the others by names and give them energy you can see one is thinner but still here me ...loosing too much weight still ..80ish lbs since surgery ...nutritionist came and saw me today ...I need to eat 100 grams protein daily ..DAILY....uhhh already gagging down food constantly... Fortunately those new wheys are 42g each and these wonderful ladies each bought and sent me a case THANK YOU Krysti and Sherrin ... still I had to go back "on the meat"...I was so proud of how vegi I was...but I need to have high protein foods ...anyone research willing or protein savvy...suggestions welcome especially if they can get me back off the meat...I'm avoiding sugars besides natural and even them more and more ...they feed cancer so anything from the savorly bland side preferred..and

..I have night shade allergies tomatoes potatos eggplants peppers etc ..yes it sucks royally.
I was too busy this morning doing and gingerbread cookie making packin chemo snacks and talking about everything and nothing all at once...didn't get a chance to paint my face ...didn't care actually truth told this ish has had me lil broke down this week kives and needles...gonna have to paint that too yeah my "tired/wired" is showing ..technically I'm probably asleep right now just cant feel it...gonna go work on my elephant while the chemo in my veins is "fresh"

...LOVE you all so much

November 22
...tough week
...middle fingers double barreled to you cancer...double.... barreled!!
Too many individual notes with the same hopefully you will all see your answer here...consider please while choosing what to say when ...really helps when they are asked here so others who know may share info...some of you are in more constant contact then others...

THIS LAST WEEK been noted ...I've been "quiet"... ...cause the cancer ache to the marrow wasn't enough I guess got a heavy hammer dropped from almost shoulder high onto big left toe earlier in the week will probably loose the nail.. so gross one for me looks DISGUSTING ..big toe of course.....been hobbling everywhere. Normally this wouldn't be a big deal...right now... No immune system...infection issue...Big deal.

..followed by a bladder infection few days later... No immune system....antibiotics= probable yeast beast ...yay!!! Not so much. ...and just a day later add chemo mouth sore by way of an abscess aka infection around a broken tooth back right of mouth face swelled up like a squirrel storing winter nuts lopsided right side only balancing the nice left side hobble sooo sexy...MOre not muching......again no immune system= another antibiotic (YBx2..given now) ...fortunately swelling is already down 48 hrs in on the antibiotics and just when we thought the trifecta of F#@kery had come to a final count ....add the new side kicker chemo affect Palmar-Plantar Erythrodysesthesia; PPE: aka Hand-Foot Syndrome aka numb/tingly fingers/toes and so far peeling bottom of feet... not good...can come with/at the cost of permanent nerve damage and my being able to paint or walk properly... yes I DID say paint 1st ... we want to get the cancer into remission... without destroying what I live to be able to do.

Hot cancer mess.
..ended "my week" ( they run Thursday to Thursday in my chemo world) with a moment of fear that my one and only was buried somewhere in the desert outside of Vegas...he's my kid...its very possible. (insert patented "ya know" Mo raised eyebrow here comboed with stern mothering looks for him when he reads)

SO THIS WEEK They canceled my chemo even though it was a light week so I am having a mandatory week off because after blood work it was clear my blood counts white red platelets etc etc were all too low to do it safely and because of the PPE as it can cause perm nerve damage ..we are also going to lower the chemo back again next few sessions see how I do... didn't really want to ..dont want it to last longer just want to power through it and be done..but i understand I NEED to and the difference between NEED>want ...learned that one along time ago ...I'll try and pretend its a vacation of sorts

On the humble side my lesson learned now...that will curtail some of my why me whining... I CAN feel worse then just the chemo routine...and all of this WILL get worse before it gets ready. My warrior status ...individually they could all bring even the strong down ...not to mention the stage 3c cancer alone...but I AM STILL HERE ...and retaining my snarkey sense of humor ...middle fingers double barreled to you cancer ...double barreled!!...and that's pretty much where I am at.

Til later...LOVE

November 29
I really dislike the whole "black" Friday title ...and yes before someone smart feels they need to tell me that it means being financially clear not in the red blah blah blah ...let's be real NO ONE out shopping is "in the black"....It's a whats not going to be in your wallet if its not already "holiday" ...."That" energy is out there emass and I had to travel through it ... And it's Chemo Friday. Had to do it today in as different place then normal got here at 10:30 didn't get plugged in until noon they are just hooking up my second chemo...The people are different ..they wear a damn hazmat looking kit when changing the bags...#TMF Doesn't exact strengthen the trust bond we already don't have..

They left me on the steroids too long before balancing with the Benadryl... Set a angry anxious mood it's hard to shake. NOT their fault ..they have had a BF line around the place today that could compete with the outlet mall..ADD its double whammy chemo day ..wasn't mentally ready for that's not a commitment it's a acceptance ...a surrendering if you will..and an empowering strength at the same time water #balance I'm sure the double whammied steroids will be speakin through me later I'll share that clarity MOment then... Right now I need to focus on not biting anyone...that and typing on this phone just seems to add to my get chompy state of mind... TY for all the #LOVE

December 3
I can not tell you how important this is...breast cancer runs in my family never thought I would have Ovarian...Genetic testing is a HUGE step ...get tested get tested get tested ...the help it will give your future generations ..male and female might be life saving.

1 comment:

  1. Fantastic! That goes to both of you Mo most of all, but Blue you are a work of wonder with how fast you can pull all the right words together. Oh my, how blessed am I to have people like you and Mo in my life!