We are All Our Own Wizard of Oz behind the Facebook Curtain: Confession time…

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I’ve been called an inspiration. I’ve been told I encourage people. I’ve been told I am the strongest person people know. This includes my oncologist who sees hundreds of patients each year. Maybe he says that to every patient. This is all while I feel like the weakest person. I miss my strong body. The body that had no problem jogging 2 miles. I miss feeling light on my feet with bright pink boxing gloves on my hands. My spirit feels weak as well. I cry daily over things I know I have no control over. I also don’t feel like I’m doing anything someone else wouldn’t do. Most people diagnosed are going to try and get the best care possible. That’s all I’ve done. Most people are going to take the chemo/radiation/stem-cell transplant or whatever they are told and it’s side effects. That’s all I’ve done. Most people are going to have a new outlook. One of gratefulness for each moment because the fragility of life is remembered in every nauseous moment, in every hard earned breath, and with every hair that falls from their head. They are positive because if you’re not, you might just lose it.

On Facebook I stuck to all the positive. I posted the small triumphs, the large triumphs and asked for prayers when needed. The truth is I have a Great and Powerful Oz persona. Behind the curtain is a woman crippled from 29 days, over the last 10 months, being pumped with poisons. Poison against my cancer and my body. Behind the curtain I’m balled up most of the time with a blanket that gets thrown off like a rebuke of the devil when a hot flash hits. Then it comes time… a new visitor arrives seeking my wisdom and I post. I make sure that my post will somehow help someone. I think part of me does this because just in case I die… I will have impacted positively. I would never want to leave this place thinking I didn’t do my best.

I know you are waiting for the confession part, here it is. The person I am trying to help most, my Dorthy if you will, is also me. Posting as positive as I can allows me to focus on that. It allows me to breath through the physical and mental side effects of this disease and the mental side effects of other traumatic things occurring in my life.

So here’s to you Dorthy, from me the Great and Powerful Oz “herself”… Keep busy, stay positive, stay focused, and remember that you chose to live your life for God, so stop making plans and start letting his plans fall into place.

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Long Roads are Paved with Potholes

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Long Roads are Paved with Potholes, but it just gives you more time to enjoy the scenery. I’ve just finished a long day.  I broke out in tears more times than I can count, I filled over 10 vials of blood, and I sweat through my shirt waiting for results.  I can honestly say I got through this day with blood, sweat, and tears.

My PET scan results came in and I can say I am very pleased by them. My doctors do not share the same view. The cancer in my lungs has shrunk, and the cancer in my abdomen has slightly shrunk. Dr. Avani wanted to see the cancer near gone. The problem I see in this is the fact that I received NO treatment for 6 weeks. My last PET scan was at the beginning of January. My original treatment ended in December. I didn’t begin this new treatment until the middle of February. Therefore, during the time that I was not getting treatment my cancer could have grown. I have no way of knowing as I didn’t have a PET scan in the interim. Another reason I tend to disagree is the fact that technically this latest PET scan should have been done next week. I just finished chemo on Monday. There is no way that the chemo’s effect could have taken place. I am happy and positive it will continue to work.

What does this really all mean? It means that the doctors have decided that an autologous stem-cell transplant (stem cells provided by me) is not something that will work. They feel with how hardy my cancer is it will only come back with a vengeance. It will mutate into a super cancer that they feel they will not be able to handle. They now feel an allogeneic stem-cell transplant will be best. This means I receive stem-cells from a donor.

Don’t let my above disagreement with the doctors make you think that this would be a mistake. Clearly there is something wrong with my body.  12 years ago it decided to overproduce B-cells, and now it is overproducing T-cells. I fully agree that an allogeneic stem-cell transplant would benefit me most. I believe that had we used my own stem-cells, it would only be a matter of time before my T-Cell lymphoma came back.

The long term plan… the road paved with potholes… will go something like this. For the next 2 months I will continue with a slightly different chemo regiment. This has nothing to do with stem-cell, it’s because the Cisplatin has caused Tinnitus (could cause long term hearing loss). They will now use a sister drug with its own varying side effects, along with the same Gemzar. During these next 2 months blood from my amazing sisters will be submitted. Both have been more than willing to be donors. Together there is a slightly less than a 50% chance that one of them will match.  If they fail as a match then we go to the registry. This is a long process. Odds of finding a match from the national/international registries is between 60-70%.

After my match is found the potholes become closer together. I will have to be hospitalized for 30+ days. I will be given what was referred to me as Super Chemo. It will kill everything and leave me needing 24 hour hospital care for about a month following. I will then have to live in Stanford. This means I move. Not only do I have to move, I have to have a caregiver. The time I have to live here is all dependent on how well I do. The estimation is 60-90 days after the 30 day stay. My caregiver will have to cook my meals, dress my bandages, flush ports, along with driving and other everyday activities. I thought I was asking a lot with having people provide meals for my kids… now I’m asking for others to put their life on hold for mine. What’s amazing is I already have 4 people willing to help and be a caregiver. I feel very loved.

My biggest heartache is being away from my kids for so long, but this time will be but a blink in my life and theirs. I would much rather lose a summer from this disease than a graduation, a wedding, or a grandchild. I want to be around for everything! If that means I lose out on 3 months then so be it.

Sunshine: I’m alive and I’m grateful.

Rain: I’m still fighting to be alive.

Puddle: I’m enjoying the rain because it fills my potholes… I refuse to do anything without enjoying it!

New Chemo New Hope

Sunshine:

A lot has gone on since my last post S,R,&P Post. My family and friends did an amazing job for my fundraiser. They raised just under $10,000.00. This is enough to not have to worry about all my medical bills and travel expenses. My gratitude to everyone involved is hard to express or even understand. I am working on all that in my own way.  {{I will have to do a whole future post on the event, so as not to detour from the update.}}

The biggest news is that I got a call from one of my Stanford oncologists who has let me know that the biopsy results are in. I do in fact only have Peripheral T-Cell Lymphoma. Knowing this has allowed a treatment plan with a new chemotherapy. I see my oncologist tomorrow and I will start chemo (by my insistence) tomorrow or Friday. The treatment I will be getting is GDP. If you want more info feel free to click the link. This new regiment will hopefully combat my refractory cancer.  http://annonc.oxfordjournals.org/content/14/12/1762.long

No one will ever be excited about getting chemo until they are not able to get it. I am excited to be fighting again.

Rain:

I had a breakdown. For several days I cried over everything. Everything felt like it was out to hurt me. I wished that the cancer would just take me. I walked about 3 miles at night just so I could feel the pain in my legs instead of my heart. At that moment the deep depressing feelings just took over. I am glad I had family who cared enough to just come get me and let me cry. My coping mechanisms for having rough days before chemo involved a lot of time in the gym, this isn’t an option at this time. I’m trying to find new ways, it hasn’t been easy.

Puddles:

Today I discovered that although rare, I have a famous brother who not only fought, but beat this T-Cell lymphoma. He has been in remission for 10 years! I pity this cancer!

Mr.T-Cell

Learning to Dance in the Rain

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Today I am sharing how I am spending some of my time. Life is way to short to ever stop reaching for your dreams. Cancer has allowed me to focus on a love I put on the back burner while attending college. God has given me an opportunity to finish my novel.

Please feel free to read Chapter 1 and part of chapter 2. This compilation is in essence also a short story. I am always open to feedback. My chemo brain makes editing even more of a pain than before. I don’t mind having errors pointed out.

I should add a disclaimer here. This novel is intended for young adults (ages 16+). There are some curse words and adult situations do take place. As a writer, I don’t confine myself to pleasantries, and as a parent I know I wouldn’t want my 11-year-old reading this. With all that aside please enjoy. I look forward to reading

With all that aside please enjoy. I look forward to reading your comments.

Fighting for Farrah

The worry of seeing yet another neon eviction notice taped to his door ate at Wes the way time had eaten his neighborhood. His eyes followed the cracks in the sidewalk and watched for the uprooted sections where the pines manipulated the cement creating peaks and valleys. Walking, head down, his hoodie allowed for a fearful solitude. A rusted iron gate blocked the view the apartment courtyard. Wes approached the entrance and spied Mr. Tan, the landlord. The older man was watering his plants. Wes’ curling fists clamped his temples as his lips mouthed a silent “oh shit”.

Wes turned from the gate and stood alongside his apartment building. Leaning on the brick wall, he strained to hear his landlord. The recognizable, staccato twang, of what to Wes seemed out of tune, hummed on from his landlord’s lips. While waiting, the irritating screech of the gate, broke off Tan’s foreign refrain to end. Wes glanced at his hand, he hadn’t realized his fingers had been working on peeling a large patch of paint from the building. Olive green brick peeked out from the dirty white overlayer.

Wes pulled the strings of his hood hiding even more of his face and turned the opposite direction. The clacking of heels, and smell of cheap perfume mingled their way to him. It was Tabitha. Wes turned to see her. The printed dress clinging to her body covered her like tattoos. Wes’ preoccupation with getting passed Tan didn’t allow the dress to fulfill its desired duty of distraction.

“Tabitha, was Mr. Tan still out?” Wes asked.

“Hey sexy, what are you doing?”

“Was Tan out?”

“Yeah, why? You late on rent again? You best stop doing that.”

“Hey, can you, you know, distract him so I can get in without talking to him?”

“I got work, the bar isn’t cool with me being late.”

“Please Tabitha, it won’t take long, I promise.”

“Why are you late again?”

“Farrah got sick this month. Urgent Care and antibiotics are expensive.”

“Jesus, that’s why I don’t want kids.”

“Will you help me?”

Tabitha moved her body into Wes bringing her mouth centimeters away from his ear. “Only because last week was amazing.” She turned back towards the gate.

“Only because last week was amazing.” She turned back towards the gate.

“Thank you,” Wes said.

Tabitha pulled the gate open, and Wes listened. “Mr. Tan I almost forgot to tell you, I think my apartment has roaches,” said Tabitha.

“Roaches? There no roaches here. We keep clean apartments. No roaches! Too cold for roaches. Maybe you see beetle.”

“I saw one, I will show you.”

“Okay, you stay here I’ll be right back. I’ll bring camera. We take picture and we find out.” The graying man scuttled into his apartment.

Tabitha opened the gate for Wes and ushered him in with a nod.

“God, thank you,” Wes said.

“Save all your gods for later, I get off at midnight,” Tabitha responded.
Wes ran up the metal stairs that led to his apartment. He turned to wave at Tabitha. The creaking gate was already sounding her departure. Wes continued running until he met his knob with a fumbling hand. The brown door was free of neon decoration; Wes’ shoulders relaxed with a sigh.
Farrah stared at Wes. “Why are you out of breath?”

“Had to get past Tan, Tabitha helped me.”

“Of course she did.” Farrah rolled her eyes. “Do we have enough money this month?”

“Farrah, I told you, you don’t get to worry about this. You’re a kid.”

“Oh, like 5 years is so much older. Seventeen doesn’t make you an adult; legally it’s eighteen you know.”

“No, taking care of my little sister and this crap apartment makes me an adult. Which reminds me it’s your turn to do the floors.”

“Wes” Farrah began looking around the room “it’s clean,”.

“Uh, no it’s not. Come on, just turn on some music.”

Farrah walked to the window and plugged in the stereo that sat on the sill. “Dubstep?” Wes shrugged. “Okay then, Dubstep it is.” She clicked the button for the CD player.
Wes walked to his room. He watched Farrah grab the broom and look around before sweeping. Looking around his room, he could breath. Things were clean, in their place, controlled. Wes lifted his shirt and inspected his stomach. He turned in the light, making the blocks of muscles stand out in the light. Wes spied Farrah through the crack in his door, staring at him broom in hand. She tucked her lips behind her teeth and struggled to keep in a giggle. The small sound of a baby elephant escaped her lips and Wes glared at her. Farrah turned her head and laughed.

“Shut up.”

“You know, I have been thinking, you should do commercials for Iron Abs. Will you teach me, I want Iron Abs too.” She popped her head in the door.
Wes grabbed the pillow from his bed and threw it at her. Farrah ducked the pillow smacked the hallway wall behind her.

“Hey, hasn’t anyone ever told you, mockery is like flattery or something,” Farrah said.

“Hasn’t anyone told you to never make fun of your older brother because he will always be bigger and…” Wesley lunged for Farrah. She darted for the bathroom, the only room in the apartment with a lock. Farrah grabbed for the door, closing herself in the door stopped before she turned the lock.

“Owe,” Wesley yelled.

Farrah looked down to see Wes’ well worn, sock covered foot, lodged into the doorway. “Oh Wes, I am so sorry.”

“No you’re not, but you will be.”

“Hey not fair! Not fair! Faker!” She screamed.

Wes erupted in, put her on the ground and tickled her sides.

“Wes, Wes stop,” wheezed out between laughing and trying to breath. “I need to pee, you will make me pee my pants.”

“Nasty.” Wes got up and left the bathroom.
Farrah turned the lock, “See, I can fake too,” she called from behind the door.

“Don’t forget who feeds you.” The fallout from his own words struck with unease. Farrah needed to eat tonight. He knew not to look in the fridge, the cavernous hollow would echo back at him. He opened the cupboard and saw two cans of stewed tomatoes older than Farrah, a bag of oriental noodles, and random baking ingredients.

“Why are you looking in there? It’s Thursday, Maggie’s making dinner for us,” Farrah said.

Relief soothed Wes’s worried complexion. “Oh I know,” he lied “I was just seeing what I needed to get tomorrow from the store.”

“Okay, well I’m gunna do my homework. You want me to remind you when it’s time to go? Maggie is the queen of punctuality.”

“Yeah and wear something nice, last week she asked if you ever wore anything besides my old sweatshirts.”

“Oh, okay, not sure how I can do that.”

“I forgot to ask, why are you home so early again?”

“Half day,” her voice cracked.

“I don’t remember ever getting this many.”

She is lying. Wes didn’t understand why she needed to ditch. School always came easy to Farrah. Her grades were good, but she never wanted to go. Wes rubbed his temple; she could get them caught. Her truancy, the scars, and cuts on her arms, if anyone found out the state would take her.

Wes was grateful the local Urgent Care helped Farrah without a parent present. Lying to them by saying their mother was sick at home on antibiotics saved them. It also helped to be a cash paying patient. The fever got the prescription. “It’s a viral infection,” the doctor said. The faded sweatshirt hid the infected cuts on her upper arms. Wes wondered what the doctor would do if they were discovered. Where are your parents would be the first question. Our Dad died. Our mom is a druggy prostitute. You might try Fourth Street in Reno or in a ditch. Wes’ head fell into his hands. He didn’t understand Farrah’s need to cut. Bringing up the cutting with her never happened. He conceded by throwing away the blades and sharp objects he found stashed in the apartment.

Wes sat down at the round wooden table, grabbed a pen, and printed his name under the large words reading Application for Employment. He toiled over each box using perfect penmanship.

“Wes, it’s time to go,” Farrah shouted from her room.

“I just finished my application, for that new job. I really think I can get it. Dinner at Moe Moe’s if I do.”

“Yeah sounds good,” Farrah answered, her eyes were downcast, and her words distant.

“What’s wrong?”

“Nothing, we should go.”

Wes stood blocking the door as Farrah tried to leave the house. “I said nothing. Come on let’s go.” Wes arched an eyebrow. He didn’t move.

“Fine. It’s just Moe Moe’s. It was where we went with Dad and Mom. Can we go now?”

“I’m sorry. I didn’t even think of it. We can go somewhere else.”

“No, no, I want to go. I just wish they could be with us.”
Wes nodded. “Okay Moe Moe’s it is, now we need to watch for Tan. Check comes in any day now so we won’t have to hide for long.”

Farrah peeked through the door and ushered Wes to follow. Their fast feet carried them downstairs to Maggie’s open door. She urged them in, her hand waving them forward. She closed the door with a pleased smile. Maggie scanned Farrah a simultaneous sigh and eye roll followed. Farrah saw Maggie’s eyes, looked at Wes and whispered “sorry.” Wes gave a reassuring wink. He didn’t like her feeling bad about her clothing. She’d grown out of everything. She even needed a bra. Her period wouldn’t be far away. Thank God for Maggie.

Moth balls and litter box filled the room and Wes’ nostrils. Piles of newspapers, shelves of gewgaws, and walls covered in family photos cluttered the living room. Maggie saved everything, especially if it was blue. Everything seemed to be in shades of blue, even her cat Mr. Bibbles was a shade of pale blue-gray.

“Thank you for being on time. It’s good to see you both. Farrah can you feed Mr. Bibbles for me?” Farrah smiled and headed to the kitchen. “Wesley Mr. Tan came asking about your mom. He said he saw her but wouldn’t talk to him. She been around?”

Wes’ eyes widened, “saw her?”

“That’s what he said.”

“No, she hasn’t been around.” Wes wondered if it was his moth; not seeing her in almost a year made the news hard to fathom.

“Well, we should eat. I made stuffed cabbages.” Wes walked into the kitchen. He watched Farrah pet Mr. Bibbles.

“How’d your test go today Farrah?” Maggie asked.

“I think I did well, all the dates we went over were on the test. I don’t know about the written part because my teacher doesn’t always understand my answers; well that’s what she says.”

“Let’s work on it then.” Maggie began serving their plates, from a steaming blue casserole dish centered on the table. “Wesley, how is the search for the second job going?”

“Well I just filled out an application for a travel agency in town.”

“Oh that would be exciting; I wonder if you would get free trips?”

“Yeah I think it would, plus the pay is pretty good.”

“Well we should eat,” Maggie said.

Wes figured dinner would make most kids gag, but being half hungry most days enhanced the flavor of every bite. Farrah and Wes ate 4 rolls each and Maggie filled a container with leftovers for them. Maggie moved them all to the living room for tea. Wes’ eyes grazed the wall; he recognized everyone without ever meeting them. Maggie’s scratched record story telling introduced each of her kids and her life. “You can eat cheap, live cheap” she would say, “I raised 10 children by myself after Samuel died, just got to be smart with your money. Squirrel away as much as you can.”

As they began to leave, Maggie stopped Wes in the doorway. “You run along Miss Farrah,” Maggie waited for Farrah to be all the way up the stairs.
“Now, Wesley Milton Marsh, you have got to get that girl dressed in girl clothes.”

“I know Maggie, I just don’t make enough, and my mom’s clothes are still too big for her, I am trying. My check and the social security check barely cover rent. I am trying Maggie.”

Her face grew weary. “Wesley you take this then,” she handed him a hundred dollar bill. “You get her new clothes and a backpack that aint covered in safety pins. Social Services will be at your door if she keeps dressing the way she is. I don’t want to see you two split.”

“I can’t take that Maggie, I know you don’t have a lot and you already feed us once a week, I can’t take it.”

“Boy, you don’t know what I have. I squirreled my whole life. I thought you might say that, so you can do something for me. You see this?” She walked back into the house, Wes followed with curiosity. She went to her bedroom, and pulled out a water colored canvas, the kind you could get at a swap meet for $2.00, “Re-paint it.” “I see how good you are, I want a beach picture, where the blue water meets the blue sky. You see this money is not being given to you. You must earn it and I expect something real good now.”

“Maggie you really want me to paint you something? I will take the money, but you have to really want it. Don’t say you want it just because you want to give us money.”

“Boy, I have wanted a painting by you since I saw the portrait you did of Farrah. I was hoping you would just give me one. Why do you think I have been feeding you all this time? I know you are going to be famous and I want in on the ground floor. I guess my food wasn’t good enough, but maybe my money is.” Her eyes disappeared into the countless wrinkles of skin as she smiled at him. This made Wesley feel proud, even though he rejected the compliment, and believed she was still just trying to give them money.

“Okay Maggie you got a deal.” He held his hand out. She took it as if to shake it but instead pulled him in close for a hug.

“I am giving you 2 weeks. Is that long enough?”

“Yeah that is long enough. I do have a favor to ask you though.”

“What is it.”

“Can you come with us to get clothes, Farrah needs a bra and I don’t…”

“Say no more, Saturday okay?”

“Yes, thank you, I don’t go into Burger Hut until 4p.m. so that would be good.”

“See you at my door, and 9 sharp then Mr. Marsh.”

“Bye Maggie.”

The hundred dollar bill curled in his sock and full stomach left Wes comforted and gassy. His body rested deeply amongst the piled blankets he had crawled under, so deep a sleep that the banging did not wake him.

Bang! Bang! The front door rattled with the force. “Open up now,” said an unfamiliar male voice. “Open the mutha fuckin’ door.”

“Wes, who is that?” Wes blinked and rubbed his eyes. He looked at Farrah and thought of how silly she looked in her pajamas. The flannel pants were high waters, and the tank top showed her outie belly button.

“Hawnees hopen di door. It’s Mommy.” The accent, the sluggish tone, and purr of the words, it was their mother, and she was high. Wes’ eyes opened in alert.

“What the hell?” Wes snatched a bat from under his bed. “Farrah hide under here, don’t come out.”

“But it’s Mom,” and she ran for the door.

“No Farrah!”

It was too late, her hands scrambled to maneuver the locks, and she flung the door open. “Farrah,” her mother said in her native way, sounding more like Far-Rah than Fair-Uh. A tall man pushed Sabeen into the living room, followed behind, and closed the door.

“Where is it Bean,” he said.

Sabeen kissed every inch of Farrah’s face before she looked up to answer the large dark man.

“Where is Wes honey.”

“I’m right here,” he said lowering his voice. He gripped the thick bat over his shoulder.

“Wesley, I’ve meessed you. I’ve been beesy so…”

“Busy? Busy is working late, busy is forgetting an appointment, or to pack a lunch. Being gone for a year is not busy. Busy is not leaving your kids to fend for themselves. Busy is not stealing everything valuable we own, even Dad’s medals and pawning them to get high. That is a lot of things, but busy is not the right word.”

“Wes, my friend needs mawney. I owe heem, so I need to pay now. I need my checks that come, the secor-reety checks.”

“What? Mom how do you think we live? What do we eat? How do we stay in this apartment? Really you think you can just walk in and take the only money we have?”

“The mawney is mine, it comes to my name. Not yours. That’s my mawney.” All the sweetness left her voice a demanding tone grew. Farrah stepped back. Wes’ eyes moved from the man to Farrah and back again, he watched as Farrah wiped Sabeen’s kisses from her face as if they were sour milk.

“Mom, you just want money?” Farrah said, words choking in her throat and tears emerging from her almond eyes.

“No Farrah, I want to see you, but I need to pay my friend.”

The man stepped in closer. Wes stepped in between Farrah and Sabeen. Pushing Farrah back he gripped the bat, ready to swing.

The man’s eyes rolled and he sighed “you said there would be money here Bean, there aint no money.” His hand raised and then swung so fast Wes almost missed it. The back of his hand struck with a force that left Sabeen lying on the floor. “You’re a lying whore.” Wes, sure Sabeen never heard the words, watched as she lay motionless from the blow. “When the bitch wakes up, you tell her she still owes.”

“Get the hell out of my house!” Wes said in the most intimidating voice he could muster.

“Kid I’m done with that whore, you aint got shit I need.” The man, pretending to lunge, caused Wes to step back. A snicker came from the man as he turned to leave.
Wes ran to the door and shut and locked it behind the man.

“Farrah, why did you open the door?” Farrah looked up at Wes, her eyes flickered as light danced across the tear filled gloss. He didn’t make her answer. “Let’s get her on the couch.”

Farrah cried herself to sleep. He listened for his mom to stir. The full stomach that was comforting just hours before was now contorting in anger. Why did you come back? We’re making it without you. We don’t need you. She would just hurt Farrah and remind him of what he was missing. He missed his mother, not this spun out heroin addict on the couch. He missed the woman who would make traditional falafel and Guass and sing while she cleaned the house. The women she was before his father died in the accident. Dad. He had to stop himself now. He shook his head like an etch a sketch to clear the image of his dad.

A knock at the door woke him from a shallow sleep. He got out bed grabbing the bat laid by his side. Walking to the window, he pulled the curtain aside to look out. Tabitha stood there, shivering in her heals, and rubbing her bare arms with her hands. Wes, opened the door a crack.

“Hey,” she said, her breath a mixture a mix of hard liquor and redbull, “come up, I want you.”

“I can’t. Shit just went down, my mom is here, I don’t know what the hell to do.”

“You come up and have fun with me. I have some shit that will make you forget about it.”

“No, I need to make sure Farrah is safe tonight, I can’t.”

“Wessy, come on it’s cold, come warm me up.” She leaned in to kiss him through the door.

He pushed her through the frame and walked out with her. “I really can’t, don’t get me wrong I want to. I can’t leave anymore at night.”

“You’re kidding right? Come on.”

“It’s not gunna happen.”

“Whatever, you’re not that good anyway.” She walked unbalanced towards her apartment leaning along the brick hallway.

Thinking of his mother passed out inside, part of him hoped she could stay and be a mom again. You’ll never stop using, I should throw you out. He contemplated listening to the tempting voice in his head that insisted on throwing his mother into the frigid morning. He wrestled the voice, and paranoia won. The wrong person finding her passed out could lead to cops. Wes walked in and stared at the couch. She’s gone. When did she leave? Wes sat on the couch, as he sank in, so did the events of the night. Eyes watering, he tried pushing the tears back with anger, disgust, and hatred, it did not work. The overwhelming knot in his throat let loose streams of tears. He hadn’t cried since his Dad’s funeral. My Dad deserves these tears, not you. The sound of a clanking handle and flush of the toilet startled him. He wasn’t ready to talk to Farrah; he wiped his eyes and pretended to be asleep.

Wes walked in and stared at the couch. She’s gone. When did she leave? Wes sat and sank into the sofa. Eyes watering, he tried pushing the tears back with anger, disgust, and hatred, it did not work. The overwhelming knot in his throat let loose streams of tears. He hadn’t cried since his Dad’s funeral. My Dad deserves these tears, not you. The sound of a clanking handle and flush of the toilet startled him. He wasn’t ready to talk to Farrah; he wiped his eyes and pretended to be asleep.

When the door opened, he exposed an eye no more that the width of a knife blade. His long lashes and the dark room made it hard to focus on Farrah’s shadow. It took a second to see it wasn’t Farrah. Even with her poor diet Farrah’s frame didn’t resemble this skeletal figure. It was Sabeen. He sat up and clicked the lamp near him, light flooded the room. A frail, sick looking creature stood leaning half her body against the door jamb. Her big jacket had camouflaged her earlier. This was not his mother. How was this women even alive? Her mouth had traces of blood. “Why haven’t you left yet?” The frosty words shot out from Wes’ lips before he even thought to say them.

“Who was that girl at the door?”

“It isn’t your business. You need to go now.”

“Wes, I’m still your mother. If you use my checks then I stay here.”

“No you left it, you left us. You don’t get to come back. You wanna bring people around like that, get Farrah hurt, or raped? Oh wait, as long as you got paid it would be okay. No you don’t get to stay, I will call the police, you will go to jail.”

“You’re not going to call the police. I know you.”

“If you don’t want me to call the cops then stay the hell away from us. I know that money is because of dad, not you. And you don’t get to come here and get Farrah’s hopes up.” His last sentence came out like a threat.

“You won’t call,” she said. “I know you well.”

“Maybe you did, but not anymore, so try me.”

“You’ll push me into the streets?”

“You chose to live there, remember?”

“I can get clean, you know.”

“Good! Leave and go do it!”

“I can get clean here, I just need a check. Get me a little to start.”

“There are no checks! They get deposited and then the rent is taken out. I use my check to pay the power bill and food. There is no money. I have nothing for you. You took everything worth anything.”

“Ungrateful son. You’re alive from me.”

“Well I guess we’re even because Farrah is alive because of me. So get the hell out.”

“You have no idea what eet is like. Your father was everything. Now hees gone…”

Wes interrupted, “you lost a husband. Farrah lost a Dad, a mom and a brother and got a 17 year old trying to keep her life together. You know I worked hard to graduate early, so I could work more. Not go to college, not hang out with friends, no, I it up. At least Farrah knows someone loves her.”

“She knows I love her and you. I know you theenk I do not. I do.”

His mother slumped to the floor. Her head which looked too big for her body hung between her knees. She sobbed. Her arms shook as they clung around her legs.

Wes wanted to go and hold her, tell her everything was okay, and let her stay. He had to stop himself from embracing her. He made himself picture one of the last times he saw his mother. The day he realized she was dangerous. The scene played in his head like a television re-run. Two men sat at their dining room table. One graying ginger, and another man younger, with a large beak of a nose. They were new, not her usual clients. Wes knew what she did and hated it. He hadn’t been paying attention until her heard, “I’ll pay $100.00 for the girl, 30 minutes.”

“No, no, you don’t want her, you pay for me.”

“Look I saw her, I want her, how much?” The conversation went silent for several long seconds.

“I cannot. Woman know theengs, girls do not. What you want with her?”

The other voice spoke up, “I know a man who would pay $1000.00 for an hour and video. Just give me 30 minutes free. I’ll get him on the phone.”

Sabeen sat silent. Wes came out of his room and stood in clear view. “Go to your room Wes, I am beesy.” She turned back to the man, “You get him on the phone and then here. All at once, one time only, okay? Let us finish quickly, but only for $1,000.00,” she insisted. Wes left the room and went to Farrah “don’t you go out there Farrah. You hide, you are not here. Those men will hurt you. Do you understand?” Farrah nodded in reply.

Wes left the room and went to Farrah “don’t you go out there Farrah. You hide, you are not here. Those men will hurt you. Do you understand?” Farrah nodded in reply.

“Yeah sure, one time only. If she is a virgin he might pay more.”

“Yes, she is virgeen. Farrah, you come here to mommy for a minute.”

“Farrah left mom, and these guys need to leave too,” Wes said.

A little giggle crept out of her mouth. “My son, so funny. Get Farrah.”

“She is gone. Unless you want me to start yelling to all the neighbors that you’re about to pimp out my 11 year old sister, you better get these guys out of here.”

The two men rose from the table, “we don’t want problems” said the ginger. They left.

“From now on, you need to be a whore somewhere else.”

“You don’t call your mother thees word.”

“What do you think a whore is? You fucking let those guys fuck you for money mom, that is what a whore does. You’re a whore.”

Sabeen stood up and slapped Wes’ face. “I might be, but I am still your mother.”

“Don’t you need drugs? Go chase after those assholes before they spend their money on another whore.”

Sabeen’s voice interrupted the exhausting memory. “Farrah, she is well? Shcool?”

“She is okay, She is safe.”

“You are your father. He was like you, always the one to protect.”

“Don’t talk about him.”

Sabeen broke the long silence. “I will go. I should go.”

He looked at her shocked. Sabeen’s face resembled a human again. Is she sobering up?

“Without me, you’re better. God should not allow me to see you. My curse. I won’t come back unless you want me. You call Salvation Station, ask for Debbie, she can find me most times.”

She stood and grabbed the large plump jacket from the floor. She went to Wes as if to hug him, he turned away. As if understanding, she nodded.

“Ahibbek” she said on her way out the door.

Wes trembled hearing those words. “Love you too,” he whispered so low he wasn’t sure if the words passed through his throat.

100s of Angels for Amanda & 100s of Thank Yous

Three weeks after my cancer diagnosis my sister told me “I want to do a Spaghetti Feed for you,”. I replied with, “that makes me feel really weird, I don’t think you should,”. I was not in a place where I could accept help. If you have ever been in that place, where you are too strong, too prideful, or too insecure to accept help, then you know how I felt.

As a little time went on my world began changing. With oxygen in tow, my fitness routine was smashed. I had been going strong for over a year working out 3-6 days a week. This depressed me to have to stop. I had to drop my 7 courses at the college. This was upsetting because anyone who knows me knew how much I enjoyed them. I also had a timed schedule for my degree and cancer changed it. I had a routine at home that I could not keep up with, because 5 out of every 21 days I would be living in a hospital. This structured world I had created, the one in which I had total control was gone. I can tell you it is a lot easier to accept help when your world feels as if it is falling apart, however, I didn’t realize how my world was falling into place.

My sister brought the idea up again a little later. Knowing, I was going to have to be nearly living in California during Stem-Cell Treatment, and knowing my finances, it humbled me. I accepted her wish to do this for me. She then went to my F-Troop, a group of close friends who came together out of a previous community event, and asked for their help. I knew my sister and friends were amazing but I had no idea the outpouring and generosity from not only them but the surrounding communities would be so high.

This Saturday there will be a Spaghetti Feed called Angels for Amanda. There is an estimation of over 125 people coming. Some people I have never met. There will be a silent auction and the donations made, some from friends and family, and some from strangers are again overwhelming.  Over $5,500 worth of products will be auctioned or raffled. I’ve heard the wonderful stories of communities coming together and have even been a part of it. I, however, have never been at the receiving end. Gratefulness sounds like a weak word to describe how this makes me feel. I feel loved and cared for. It brings tears to my eyes to know I am this important to someone. It’s a wonderful feeling.

For Tickets you can visit Everbrite https://www.eventbrite.com/e/angels-for-amanda-tickets-15024291059

Tickets can also be purchased in Carson at Reruns with no additional fee.

They can be purchased in Reno/Sparks area through Vikkey at 775-771-2980 or Niki at 775-434-3471, also with no additional fee.

Tickets can also be purchased at the door, but my Angels are asking for head counts so if you plan on purchasing at the door then please visit the facebook page and let them know. Event through Facebook.

If you cannot attend but wish to donate, you can do so by going to YouCaring

If you want to donate an auction item please contact Vikkey at 775-771-2980 or Niki at 775-434-3471. All auction items must be in by Saturday ready to go, as my Angels will be busy.

So, as to not begin an Oscar like thank you speech, I wanted to share with you the people and businesses who have dedicated time, product, services, and generosity, becoming my Angels. This is one of the ways I am thanking them! Please explore their businesses and services and tell them how AWESOME they are, or just like their facebook pages.

The Kerak Shrine offered their venue FREE of charge. They are even opening the bar for anyone who wants to buy a drink.  If you are looking for a place to throw a party in Reno, make sure to check them out! The space has all the amenities needed for a big bash!

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All the Angels below have donated prizes for the silent auction or raffle. Again please visit thier Facebook pages, websites, and locations and let them know how amazing they are!

Performance Training gave 5 Separate, One Month Trainings (this includes 2 weekly sessions) a $150.00 value each for a total donation value of $750.00. 

10036_728582760494910_1210276651_nT Dizzy also known as Teresa Silva donated her tattoo services in the form of a $500.00 gift certificate.

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Mt. Rose Ski Resort donated 4 lift tickets, a $360.00 value.

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The Orleans Hotel in Vegas  has donated a 2 Nights/3 Days stay and a Prime Rib Dinner at the Steakhouse $250.00 value.

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Julie Flores and Platinum salon have donated a basket with a gift certificate for a cut & color/weave and Redken products, a $190.00 value.

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Fitness Connection donated a 1 Year Membership, a $350.00 value.

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B Medical Spa donated a basket containing a gift certificate and Merle Norman beauty products valued at $200.00.

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My Renown Oncology nurses put together a basket that includes a 90 Minute Massage, Candles, Lotion, Chocolate, and Wine, a $150.00 value.

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Petal to the Metal in Reno donated a $150.00 gift certificate for a flower arrangement.

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Whispering Vine and another Angel created a basket that includes 2 pairs of wool socks and 2 bottles of wine, a $60.00 value.

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The Reno Aces donated 4 Infield Reserved tickets, a $76.00 Value.

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Silver and Blue Outfitters let my Angels put together a basket that includes a little bit of everything for the UNR fan, at a $60.00 value!

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Wild Island donated 6, Pick One Attraction Tickets, a $42.00 value.navlogo

Newman’s Deli in Reno donated a $25.00 Gift Certificate.

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Black Bear Diner donated a Dinner for Two a $50.00 value.

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Cold Stone  Creamery donated a basket with 4 Ice Cream certificates & T-shirt, a $40.00 Value.

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Body Jeweler Company donated a $20.00 Gift Certificate.

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Portratography in Reno donated a $50.00 Gift Certificate.

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My Angels put together a Pregnancy Keepsake Basket, it includes a 3-D Keepsake Gift Certificate for $140.00, Knitted Baby Items, a Baby Organizer and the What to Expect when You’re Expecting book a $200.00 Value

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Picasso and Wine donated a Gift for Two, an $80.00 value.

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Fit with Brie donated Two Weeks of Personal Training, a $80.00 Value.

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Niki Mercer Scentsy Consultant, (775-434-3471) donated a basket  of mixed Scentsy Products, a $100.00 value.

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Tutu & Bow sets were put together by 2 Angels, Niki and Marquel. There are 2 up for bid, a  $20.00 value each.

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Golik Photography donated a Gift Certificate with a $125.00 value.

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Marquel donated lots of fun knitted things. Values vary!

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An Art Angel Donated 3 Separate art pieces with varying values.

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Maria and Mari donated a basket of mixed products including Ulta & Yankee Candle, a $50.00 value.

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Beverly donated 3 collectable Barbies all with varying values.

Corie donated a brand new Coach Purse a $150.00 value.

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Everlasting Footprints Photography in Carson donated a $125.00 Gift Certificate

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Grassroots donated 8 $5.00 Gift Certificates, a $40.00 value.

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Reruns in Carson Donated a 23×16 Decorative  Window/Picture Frame a $70.00 value and a decorative bowl, a $65.00 value.

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Just Brew It  donated products of varying value.

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Jerry’s Restaurant in Fallon donated 2 Dinner for Two certificates.

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Jennifer donated over $200.00 in Party Light decor and candles.

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JJ’s Pie Company donated a $40.00 Gift Certificate.

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My nurse Laura made this Valentine’s Wreath, a $25.00 value.

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Premiere Jewelry donated items with a $110.00 Value.

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An angel donated a jewelry box with jewelry, a $40.00 value.

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Sharon and Jim Hoff donated a Denali camp stove valued at $75.00.

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Kris Pauley donated a Longerberger Basket a $75.00 value.

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A Plexus basket was donated by Jeannie with a value of $25.00.

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There are still donations rolling in. It is amazing to see the support and love shown. I cannot thank you enough!

To my Uncle Steve owner of Sclafani Painting thank you for donating $250.00 towards the food for this event! I know this helped the event stay as cost-free as possible.

I would also like to put a special thank you out to all the Masonic Organizations. Adah Chapter Order of the Eastern Star for also helping in paying for food for the event. Your donations were so helpful! To all of the Nevada OES chapters thank you for making numerous donations to help towards my medical costs. I, being a member for only a short time, am already feeling the love! I could not ask for a better organization to be apart of.  To the 2 Past Masters, Ed Young of Washoe Masonic Lodge, and Josh Lantz of Reno 13, thank you for helping with this event and being amazing friends. Ed will be our MC for the night and Josh will be our DJ! Masons wear a lot of hats.  Thank you Vikkey for getting some Grandies from the Order of Rainbow for Girls to come help serve. As well as your friendship and dedication to this Feed. Without you and my sister none of this would be possible! You both worked your tails off. I must of course now thank my first order, Job’s Daughters. Thank you girls and adults for allowing the donations to go through you, that way these businesses could benefit. Thank you also Rita Iroz, and Maddie Iroz for your help in making the center pieces. You know all too well how cancer can flip your world upside down.

To my sister Niki, thank you for being persistent in helping me see my need for help. Thank you also for paying for the table cloths, napkins, center pieces, mason jars and, anything I forgot. I love you.

Thank you all who are coming, have donated, or have prayed for me.Please know that your prayers are worth more than gold and I know God is listening.

Below are duplicate links to purchase tickets, make a donation, or get details on the event.

For Tickets you can visit Everbrite https://www.eventbrite.com/e/angels-for-amanda-tickets-15024291059

Tickets can also be purchased in Carson at Reruns with no additional fee.

They can be purchased in Reno/Sparks area through Vikkey at 775-771-2980 or Niki at 775-434-3471, also with no additional fee.

Tickets can also be purchased at the door, but my Angels are asking for head counts so if you plan on purchasing at the door then please visit the facebook page and let them know. Event through Facebook.

If you cannot attend but wish to donate, you can do so by going to YouCaring

If you want to donate an auction item please contact Vikkey at 775-771-2980 or Niki at 775-434-3471. All auction items must be in by Saturday ready to go, as my Angels will be busy.

Thankyou

The Chemo Has Stopped Working

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Today I am starting with rain, as it feels like a torrential downpour.

When she said the words “the chemo has stopped working”, I had already been crying. I knew. I knew when the intern had come in and tried to put the positive light on things. He said the cancer hasn’t grown and that is a good thing. Yes, yes it is, but I knew something was very very wrong. I knew that by treatment 4 nearly all the cancer should be gone. With my mom by my side we waited. Waited for the big guns to come in and give it to us straight, and she did. Dr. Avani said those words, and I wasn’t shocked. I had already known. Sometimes you just know. I had just the week before texted my mother and told her that something was wrong. That I saw the lung x-ray and it wasn’t good. I saw how much cancer was still there and I knew it wasn’t good. I knew I should be seeing little to no cancer by now. So, again, I wasn’t shocked. I had hoped I was wrong, but I had already known. What I didn’t know was that she would stop chemo all together. You see there is no point in having chemotherapy when it isn’t killing the cancer. Plan of action now, wait to be called by my doctors office to be told that a new lung biopsy is scheduled. Dr. Avani wants to see if we are really dealing with Peripheral Large T-Cell (NH) Lymphoma. She also wants to rule out me having 2 different types of cancer at once. (With my luck, it is not out of the question.) Upon having this surgery then I get to wait some more. I get to wait for my little fleshy cancerous growth to get dissected and played with and looked at on a molecular level, at which point a name will be given to it. While I wait, I will hope, and pray that this aggressive cancer doesn’t grow inside me. Then I wait. I wait for the Dr.s to decide what my treatment will be to combat my cancer. Then I wait. I wait to see if the chemo (this time) is working. Then I wait to make sure it continues to work. I wait… I wait to be told whether or not I will even make it to the stem-cell level of treatment. I wait to be told whether I will live or die.

Sunshine

There is a blessing in all this, many actually. The first of which is I will get to see my daughter Angel hand the reigns of her  youth group on. I will get to see Amy one of the most charismatic young woman I have ever met receive that crown, from Angel. I will get to see my other daughter Cheyenne, get one step closer to receiving that same honor. I was going to have to miss this, but I will get to see it all now. I will get to turn 34 without an IV coming from my chest. I will get to spend a couple weeks feeling normal. I will get to wake up free of pain and nausea. I will get more time with my kids, and friends, and family. There are many things I can be grateful for. Maybe this is God’s way of saying, hey I know it’s been hard, so here have a little break. I am choosing to linger on that thought.

This may seem like a weird sunshine, but it is good to know I am not crazy. I thought I was crazy for thinking something was wrong. I am not a doctor. I never went to school to read x-rays. I should not have a clue as to what I am looking at. The problem is, I ask a lot of questions. I research everything. I like to know as much as I can. Knowledge is power, but ignorance is bliss. I single handedly destroy my bliss, because I would rather be knowledgeable. I had asked to see my first x-rays. I knew the whispy clouds enveloping my lungs were not supposed to be there. So, my sunshine is really in knowing myself. I would rather understand and know the facts, and then really focus on tangible positives.

There are other treatments. This is a sunshine. I will be in the next couple days contacting whoever will be willing to talk to me. I have been hearing about DNA tests that tell you what chemo will work best for you. I will be talking to several people that I have found that have made it to stem-cell treatment level and see what treatment worked for them. I will be my own advocate. While I know the doctors are truly trying to make me well, I also know God has given me this inherent knowledge of knowing when I need to step in and advocate for myself. I am going to be praying that he lead me in the right direction.

I have sunshine because my rain really changes nothing. I am here on earth as God’s child. None of us know how long we have. Driving home with my mother in the fog last night I reminded myself that I really didn’t know if we would make it home okay. I didn’t know if that would be our end. I just need to try and spend each day remembering this is not “my” time on earth, it is “His” time. I just hope I am spending it the way He wants.

Puddles:

I’m going to avoid the gruesomeness of vomit, poop, and urine. Instead I am going to tell one of the stories in my life that make me smile every time I think about it. Cheyenne and Angel are in the kitchen washing dishes together. At the time they are both about 12. Cheyenne turns to me and says “Mom, I can’t get this off”, she is elbow deep in warm sudsy water scrubbing a pot. Something must be said about Cheyenne. She is the sweetest child, combine this with her developmental delays and you will find yourself wanting to do things for her. When she first came to our home at the age of 9 she still could not even brush her own hair. This was not because she couldn’t, it was because it was just so easy to do it for her. I had to train myself not to give into that. I, even though, it was much easier and faster to do things for her, realized I was really doing nothing for her. I was hindering her. I was saying you are not capable, let me do it for you. I had to empower her, not hinder her. So by the age of 12, we had gotten to dishes. When she turned and said “I can’t get this off”, my first instinct was to scrub it off myself. I stopped myself. “Just use a little elbow grease Cheyenne, you can do it,” I replied. I left the room, and it was shortly after when I came back in that I found Cheyenne under the cupboards, reading cleaning bottles. I knew right then and started laughing and asked “What are you doing Cheyenne?”.

“I’m looking for elbow grease.” Diligent to a fault, and concrete as they come, I still smile. Yes, it is cute that she went searching for elbow grease, but what makes my heart smile is that she didn’t give up. She didn’t say she can’t again, she trusted that she could. I need to take a lesson from her and TRUST I can get through this too.

Stanfordflower2

So You Think I’m a Bum…

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Some days my entire body feels as if it is covered in bruises. A mix of chemotherapy and regular nuepogen shots take over the nerves of my skin, movement of my joints, the strength of my muscles, and bones of my body. I am bloated, sore and tend to walk like I am 80 years old.  I cringe when I am hugged, and on occasion, I swear at my sister who has forgotten my pain and swats my arm grabbing my attention. To combat this, I wear soft pajama pants. They are warm, loose, and allow comfort where comfort is hard to find.  I wear slippers, as honestly my feet swell so much that slippers seem to be the only thing they fit in. I don’t wear my wig, as my scalp tends to irritate easily. I turn to soft beanies or scarves or if one of the hell flashes erupt I allow my melting scalp freedom in the open air. As a person just trying to find comfort, I never thought I would be in need of defending my fashion choices. In that defense, I have learned to be a little more open minded about things I tended to ignore.

My Oncologist’s office is right across the street from the old St. Mary’s hospital in downtown Reno. The four story building attaches on the ground floor to a parking garage. I had just finished getting a nuepogen shot and was making my way to the parking garage. I stopped as I was feeling light headed. It happens from time to time. In this small corridor that connects the building and the garage there are a couple benches. I sat. I barely noticed the man sitting on the other bench. I was hunched over my knees just trying let the light headedness pass. I felt the cold air from outside blow in as a woman walked in. She was wearing a long black jacket, and tall boots. I saw the back of her as she began talking to the man. “You cannot be in here, there is no loitering. I know it’s cold, but you will have to find somewhere else to be.” It was then I looked at the man, actually looked at him. He was rummaging through a shopping bag, his leathered face, and beat up jacket was enough for me to come to the conclusion that he was probably homeless. The same conclusion this woman had come to. It was then that the long black jacket turned to me and I looked up at her. “You too ma’am, you can’t stay here.”

I was immediately furious. I stared at her perfectly curled hair and make-up, and whipped off my hat.  “I just got done at my oncologist’s office. Excuse me for needing to take a break before heading to my car.” As if my bald head was some superhero shield against the unjust.

Her face, and maybe it was all in my head, was as neutral as ever, she turned and walked away. She had no words. No apology. Nothing. I was still angry, fired up, and then embarrassed. I put on my knitted beanie, that resembles cabbage patch hair with its braided pigtails in shame and walked towards the elevator. I felt bad in that moment. Someone thought I was a bum. I felt dirty. My eyes traced my clothes, my slippers, and I felt like hiding. I vowed in that moment not to tell anyone what had happened. This was a truly embarrassing moment. A paranoia surfaced, and I wondered if everyone knew I looked like a bum and was just afraid to tell me. Did they just not want to hurt my feelings? My sister called right as I was getting in my car, and I didn’t tell her. I was ashamed.

It was a little later in the day as I began to reflect on everything, that I began to feel bad for a whole other reason. I had stood up for myself, bald head shield and all, but not that man. What was wrong with him getting warm in that corridor? He was not harming anyone. If anything it was that woman in boots who had harmed someone. She had harmed me, and probably that man. I finally told my sister and brother in law in the late afternoon. They were in agreement she was not a very Christian woman, and those words were not the ones used.

At first I was upset and embarrassed with myself. How could I go out looking like or getting mistaken for a bum. Now I just regret not saying something for that man. For all I know, he had a Dr. to see as well. For all I know he was waiting for someone. For all I know he was just trying to stay warm. There is nothing wrong with that man sitting on that bench. Not everyone knows my story, and I don’t know theirs. The biggest thing I learned from this experience is to remember that I don’t know what is going on in people’s lives, and it is not my place to judge. In this I have learned that I should give the benefit of the doubt to the woman in boots as well, maybe she has no control in her life, maybe she needed to feel superior for a moment, or maybe it was also her time to learn my same lesson.judge

“I got cancer, and it has been a blessing.”

Starting 2014 in the throes of a healthier life change, after already losing a tremendous amount of weight, and ending it in chemotherapy has been both a shock and a blessing. Reflecting back now,  I can see how my every thought was on the future. How many pounds will I lose at the end of the week, the end of the month, the end of the year. How many more classes will I need to take to graduate. Where would I like to teach upon completion. I made meals for the week and froze them. I was rushed, over worked, and down on myself most of the time because I wasn’t performing to the standards and the goals I had set. I instead of slowing down, tried harder. I Told myself I wasn’t pushing enough. I increased my workload, both at school and with my outside physical activity. What did I get for all that effort and hard work?  I got cancer, and it has been a blessing.

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Sunshine: 

My biggest sunshine comes from knowing my cancer came for a reason. I was not living in the present. I was living for the future. While I learned that I have the will to complete goals earlier this year, I forgot to enjoy the progress of them. While I learned to love myself more, I was loving myself for accomplishments, and not just for who I am. I always had a project, a goal, or something to fill my time. I have learned that it’s okay to do absolutely nothing at times. A hospital room can get lonely, but I have learned from that as well. Cancer has taught me a lot. Cancers’ blessings have refocused me, and I am determined to enter this new year with these new mindsets, gifted by my disease.

1.) Live in the now! I will no longer be a slave to my goals. Instead I will enjoy reaching them. I will be okay when it takes longer to reach them. I will focus on then energy I have for the day.

2.) I will enjoy more of the little things! Where I was before in a hurry, almost annoyed at times, to talk on the phone with friends and family because I was just too busy, I will remember just how valuable that time is. When my children want to talk, I will not rush them, so I can finish a paper, or a load of laundry. I will stop, because nothing in this world is worth giving up time with my kids. I will now remember the feel of their hugs, because I memorize how the hugs feel. The way I made myself memorize Hayden’s soft head when he passed. I, as a mom who has lost a child, should have already known to do this, but future thinking got in the way.

3.)I will know I am valuable regardless of what I accomplish. My value is not determined by a person, an accomplishment, a failing, or my cancer. My value has and always will be the same. I am loved by many, and I love many, and in that my life is valuable.

4.) I will give more. I will give more of my time, my love, and my energy whenever possible. I hoarded my energy selfishly on getting fit, making the grade, and running my home. I need to remember that while those things are all important, there is an innate need to do for others. If I ignore that, I am hurting myself. I know that in giving to others, I feel closer to God and humanity, and that is the only way to truly fuel my life.

5.) I will make time for fun! Good thing I can have fun doing almost anything. Cancer has taught me that I can even have fun telling people I have Ebola. Don’t worry, I have only done it once or twice, and then eventually told them it’s cancer. But really it is hard to take me seriously, I walk around the oncology floor with wild hats and PJ’s. I can have fun anywhere!

6.) I will be grateful! I am grateful that I have the energy to write today. I am grateful that you are reading this sentence. I am grateful for so much in my life that the things we call “tough”, “bad”,  “rough”, and “scary”, are code words for “THANK GOD I’M ALIVE”! It’s cliché but the line that says “it could always be worse” is true. It can. At times it will be worse, and those are the pivotal moments in which I will choose to count my blessings!

7.) I will write! It is something that allows me to be me. I do not censor myself. I am fearless. I am free. I allow emotions to spill onto the screen that would otherwise lay dormant, and ignored. I will not perseverate on what I write, instead I will freely give what comes to me. As I am now. I had no idea what I would write about today.

8.) I will be okay with not having control! This is my toughest lesson and one I am still dealing with. I am okay without having control. Please remind me of this if you see the sneaky little bitch trying to take over.

9.) I will be accepting of help and try not to feel guilty from it. Guilt is my constant agonizer. I have long been burdened with feeling guilty anytime I somehow inflict burden on someone else. Cancer is a reminder that I don’t mean to be a burden, therefore, letting go of the guilt is okay. Not just when it comes to cancer, but also with everything else.

10.) I will be positive. I refuse to give into the negativity of others, the negativity of fears, and the negativity of our society. I will cast off my cynicism, and move through my fears. I will use the things I am grateful for, the knowledge of blessings, and the love I am shown to continue to be positive.

My word for 2015 is present. My main goal is to live in the present, and acknowledge it as a gift. Thank you cancer, for reminding me of what I was choosing to miss out on. My hope for all of you is that you can find the joys of living in the present as well.

DalaiLama

Rain:

Christmas Eve came with devastating rain. Our family returned home from our yearly family/friend party. We live on 10 acres, so entering our property is not your typical endeavor. Our dirt road leads to a gate that must be manually pushed. Our dogs always come running to the top of the hill to great us when we arrive. When the boys got back into the suburban, after closing the gate, my husband as usual, started down the small hill to the house. We didn’t get far. A thudding occurred on my side of the vehicle. I knew. I knew in that moment it was one of our dogs. My husband jumped out of the vehicle. It was Onxy. She was instantly dead. My kids were immediately distraught. I was in shock. Onyx was 13. She was a black chow/lab mix and the most loving dog you could ever meet. My heart is still aching from this loss. She was older, her hearing and eyesight were failing, along with her bladder. I can be grateful that she did not suffer, and that her last moments were happy, because her family was home. I can only hope that when we pass that she will be welcoming us to our forever home.

onyx2

Puddles:

I have to share an old Onyx puddle story. Tyger, now 14, was in first grade. It was about an hour past bed time and I heard him call for me. Entering his room, I discovered his little hands doing their best to cover his mouth. He was turning his head back and forth looking for where to puke, and as he did springs of watery red chunks spewed through his fingers. Thinking about this now it really resembled a fast paced sprinkler shooting regurgitated lasagna along the floor, walls and furniture. I quickly rushed him into the bathroom and proceeded to clean him in a warm shower. I grabbed some clothes that I was folding on the couch and helped him dress for bed. I told him he needed to wait on the couch until I was done cleaning his room. When I got to his room, it was like Tyger had never even vomited. Welcoming me to the room, with a delighted wagging tail, was Onyx. She had taken it upon herself to devour every last bit of the lasagna puree that had showered the room. I was both thankful and disgusted.

To Onyx,

   I hope that we brought as much joy to your life as you have brought to ours. You helped so many children by just letting them annoying love on you. You never bit, you never wined, you somehow knew what those children needed. You were my friend, and a love. I will truly miss you. I am so grateful that you were in my life and in the lives of all the children that came through our home. Rest in peace.

onyx

Sunshine, Rain, and Puddles… The good, the bad, and the dirty!

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Sunshine, Rain, and Puddles…

So you are all aware I am almost done with phase 3 of chemo at Renown Hospital. I get to go home Tomorrow night if I have no complications! This post will be a little shorter, you’re welcome my non-reading family members and friends. May I suggest an app that reads out loud to you as I will not be vlogging or providing audio anytime soon.

On with the Sunshine!  Well I really must say my care has been amazing again! I could never be a nurse… and it takes just the right kind of person to be a good nurse! I don’t worry about shift changes because they are all wonderful, kind, supportive, attentive, and caring. I keep an extra large bag of hard candies out for my nausea and make sure the nurses are aware of their free reign of it!

I got to see my kids last night, and I love that I am not nuetropenic so hugs are allowed. It amazes me how just their presence can comfort me, even if I am telling Justin to sit and be quiet 20+ times. His voice can carry through the room pretty easily. I feel at home being a mom and I think that is where the comfort comes from.

My parents and sister and brother in law brought me soup! Such a wonderful supplement to the turkey sandwiches I have been ordering. Again comfort, not just from knowing all my veggies are cooked and I have a safe meal to eat, but knowing I am cared enough about to be thought of. I appreciate it so much!

inspired

My last sunshine goes out to all the messages of encouragement and hope. Yesterday I was trying to create a compilation of all my Sunshine, Rain, and Puddle Posts from Facebook and while doing so… I was left in tears several times. You have no idea the depth of my gratitude for your uplifting words and prayers. This may sound crazy, but who cares how I sound at this point, I can feel them. There are times in the day where I will randomly feel a little better for a while. There is no other explanation other than your prayers are being heard and God is listening. I have received in box messages from people who are expressing just how much my words mean to them. That they think about things differently, are more grateful, or are just inspired. This is amazing… I feel like I am getting to be a voice for the Lord, and getting to share something so special. I thank you for allowing me to do that. Know that all the little, messages, prayers, and well wishes are not only being read but are also being felt!

reddevil

Rain, sadly I have a little. The adriamycin is rearing its ugly little head. So you know this drug has nicknames which include, Witches Brew, Red Death, and Red Devil. Well now… seems strange that I am allowing this to pump  through my body, however, it is part of the regiment. Sadly, there is a lifetime maximum dosage with this drug, and because of my previous cancer I have already had a heavy handed dose. Going over the maximum dose will lead to heart failure. They wanted to increase the “Red Death” in my next treatments but could not. I would then go over that maximum allowed dose. So this brings me to what it is doing. This drug effects the heart, and I have had to get several Echocardiograms to measure its effect on me. My previous ejection fraction was a strong 65-70. After this week’s echocardiogram my ejection fraction has dropped to 55-60. While this seems like a lot, let me assure you that 55-60 is still within a safe range. It is not until I hit 40-55 that we will have to worry. I will be doing another echocardiogram before my next chemo session, if my ejection fraction has dropped again, they may discontinue the “Read Death”. I’m hoping that my the left side of my heart will just keep going at the 55-60! I know this drug is dangerous, but it saved my life once before.

jack

Puddles:

I have no clue why most of my puddle stories are disturbingly gross, maybe it is just because I have no shame in sharing my puddles, and I am also realizing that I have a very warped sense of humor. So, as some of you know I acquired a few new beanies. (Ross has a great selection at really low prices!) One of them is a Jack, from “The Nightmare Before Christmas”. I posted a picture of him above, not my Jack, as you will soon find out why.

It’s 1am… I sleep with the hat; it keeps me warm. No hair creates a chill. When I woke I was having a hot flash and an urge to pee, I whipped off the hat and pulled the IV plug from the wall. Dashing into the bathroom, IV in tow, not worrying if the door shut, not needing the light, just trying to save my pants from a puddle, I sat. I was home safe! No puddle pants! Pulled my dry pants up (after wiping of course) and felt something slide down my back, turned to find Jack smiling at me from the bowl. Well not just the bowl, my “hat”, the other hat… the one that catches all my urine. Hats unite? Jack’s new clean white, became tinged very quickly. I, distressed, pulled him out and rolled my IV as quickly as I could to the sink and proceeded to hand wash him with soap and water. I hung Jack to dry. Luckily my back up fish hat was here, which is also super cute, I am not hatless! My sister was kind enough to take Jack home last night and give him a real wash in her washer, after of course her laughing at what had happened. The only thing I think could have got him caught were the braided ties on each side. Either way Jack has made it through the wash and I am assured he is still smiling and white! Just when you think you are safe from the puddles… dun, dun, dun!

Sunshine, Rain, & Puddles Official Blog Entry #1

I turned these posts into a blog for a couple reasons… the first being my hope is to bring something to other people facing hard challenges in their life, if at all possible. The second may be somewhat selfish, but I really hope on meeting someone with my same rare cancer. Hopefully somehow this blog will make it to another Peripheral T-Cell Lymphoma fighter.

Sunshine, Rain, and Puddles:

It’s been awhile, I know, and I am missing a lot in this post, but it is plenty long. I have to admit my good days have been filling up with things to do and sitting to write my updates has not been a top priority. I miss doing them and I want to push them a little higher on the priority list. In this post you will see my current medical status, an abundance of gratefulness, a few nasty stories, a great poem written by me, and hopefully a little inspiration from somewhere in here that allows you to have a little sunshine!

Sunshine:

It is so peaceful to wake up in a hospital and feel blessed. Not just because I woke up and get to spend another day on this beautiful Earth, but also to have everything I need. Family, Friends, Dr.’s, and these amazing Hospital Workers who are dedicating their time to my recovery, my health, and my life. (Yes, I capitalized these people, because I felt it “proper”!) I cannot feel anything but peace. I enjoy having no doubts about my recovery. That doesn’t mean an hour from now that could change for a brief moment, but I will linger and cling to this freedom for as long as it stays with me. Well I know you are all waiting for an update and more sunshine! I can’t get enough of that overwhelming warmth either!

Thanksgiving was a blast! I think we had to set 40 table settings. Everyone brought so much food, but better than that their smiles, and love. Angel, Jaden and I changed up the Dirty Diaper recipe (Glorified homemade Hot Pockets infused with my Alfredo sauce, grilled chicken, bacon and mozzarella), via a Pinterest idea, and it saved so much time. Despite the disgusting name they were still a hit, and the recipe was asked for. Problem in this… it’s never the same, but always good. I made the sauce up and it changes a bit each time. I will put this on my to-do list! I wore the mannequin wig until the itching took over and enjoyed the rest of the day feeling soft breezes on my scalp. I love that I’m over hiding my head around family and friends… I still need to work on non-hospital public settings.

thanksgivingdirtydessertspennymewine

****I know you are all waiting for this, as I was too!!! STANDFORD UPDATE!****

Stanfordteambald

First off I’m so thankful that my Mother (Jo Vanderdoes) and Sister (Niki) drove me up to Stanford. (We also had the most beautiful tag-along, who didn’t enjoy the car ride as much as I did. She was still a sunshine for me! I love my Team Bald Buddy Scarlet!) The real sun was covered in rain clouds but beamed from our attitudes. Could not have asked for a better road trip crew! On with the details!

#1 Upon getting my PET scan results I have learned that my cancer, after just 2 treatments, is shrinking!!!!!!!!!! YES SHRINKING!!!!!!! I also learned that my situation is very rare HOWEVER… not on a solo path. Dr. Advani says she has treated several others who had the large B-Cell lymphoma previously. That makes me feel better, even though I have no idea if they survived or not. I guess just knowing I’m not the only person who has gone through this helps. Dr. Advani also drew out what B-cell and T-cell lymphoma look like and they look very similar. The pathologists then have to brake down the lymphoma on a molecular level to really know the type. This is why during both of my cancers, it took so long to get answers on the type.

#2 I got a plan! As I have mentioned before, and if any of you know me, I like plans. So I have one! I will have 6 total chemo treatments. If all goes positively, I will then be a candidate for Stem-Cell treatment. We have started the process of getting to the Stem-Cell Dr. He has a 2 month waiting list, which really makes this pretty perfect, as again if all goes well I should be done with chemo in February. (I plan on kicking the shit out of this Cancer! 😉 ) I will get to use my own stem-cells. This makes me so happy as I have heard that the effects on donors are not always positive and can even have cancerous results. I honestly have conscious issues with even allowing anyone to do that for me. I was so happy to know we are going to be using my own! Down side is 6 months of stem-cell stuff and at least at some point a 14-21 day stay at the Stanford hospital, but I am blessed that they are a preferred provider on my insurance!

#3 I got permission to exercise!!!! The chemo shrunk the cancerous lung nodules and this has allowed for better breathing. I have some rules, like not pushing through workouts as I would have before. It has to be light and manageable. I really want to take some time to put together a chemo-exercise plan as there isn’t much out there. (((Oh, the ideas I have! I just wish sleep was not necessary sometimes.)))

#4 I understand my cancer better. Yes it is rare but it has been beaten! This is huge! The internet paints a dismal picture. So… my chances of survival with just Chemo are 40% with stem-cell treatment it shoots to 66%. I’m really bad at math, but to me that means I have 106% chance of beating cancer! 😉 There is this 20% chance that the chemo may stop working, however, I’m going to forget that little fact and focus on 106%!!!!

#5 God spoke to me directly after leaving my Stanford appointment. (I know some of my friends are not believers, hell even my husband is in that boat and I am respectful of that.) Walking outside the hospital, I looked up to find the sky lit with the brightest rainbow glowing above me. There was also an average rainbow right above it. There is a larger, more in depth story to this that I will have to share in another post. It will be a testimony, but for now, I do believe, feel, and know that this is my sign. For those of you who have never been spoken to by God, or have been, I can say this for only myself. For me His signs are visual and His words come in waves of flooding emotions into my soul. For these moments do not always come in quiet places, but when He speaks time stands still. A feeling of peace, and a resolution of empowering courage, strengthen my mind, body, and spirit. There is nothing earthly about these moments and the ethereal grace being given is something I treasure.

doublerainbow

#6 The little things… I have posted some pretty huge blessings and I think it is time to give some love to the little sunshines helping me along the way. Music, my Pandora or Spotify are on all the time. (Feel free to link me to anything, I am pretty open.) Messages, cards, texts, and calls oh my! I am so grateful for the positivity and love I get from them! New PJ’s and beanies, I am rocking the hospital halls in style! (I even match.) Laughs… I have been doing so much laughing lately! Asparagus! I know makes our pee smell weird, but I love it and it’s on the hospital menu… can’t beat that! Coffee creamer, need I say more? Hugs! My niece Penny is by far the best hugger around! The ability to do more with my kids, with school on hold, and stepping down from a leadership role, I am able to see them more and do things. My handicap sign. Not always needed but it sure helps when the pain starts coming. Internet access… but really that just gets me to Pinterest and Facebook, I should be honest here and admit I may have a problem, nah… I will wait until I have done a few more projects, and tried a few more recipes! I am most of all grateful for my good days! I appreciate them and look forward to them even on the worst days.

Rain:
So… sometimes life gives you lemons, and sometimes it feels like someone is shaking the whole damn over-ripened lemon tree above your head. My advice besides buying a helmet.. forget lemonade (really overrated beverage if you ask me!) instead visit this site 😉 Thanks Pinterest! http://www.trueactivist.com/45-uses-for-lemons-that-will-blow-your-socks-off/. Okay that would be sound advice if it was actually lemons, but I guess real problems are not so easily taken care of. I try to find the good in each situation, and it usually comes down to relationship.
Before my last chemo session I spent most of the day with a flat tire, and in that I met a very nice truck driver that said he would add me to his churches prayer list. This didn’t change the fact that 4 new tires had to be purchased even though only one was out of commission, but life rolls on. My brother-in-law even called the tire place to make sure I wasn’t being pushed around, again I have people (relationship) there to help.

Then the heat went out in my home while I was in the hospital. We are on a boiler system and not many local heating businesses service them. We were able to secure someone to come out about a week later and get it working. Another couple hundred dollars (sour lemon) for a warm home! {{Well worth it.}} When I posted to Facebook, I had friends who were willing to help us find a servicer. Relationship!

Then the doosey that is still not 100%… our well, our life source! Life on 10 acres is not always so easy. I don’t get to call up the city and ask about my water, or gas. We are responsible for those things. Bottom line, after getting billed $900.00 to fix the well and having it be in the same position less than 24 hours later was disheartening. Now here we go with relationship again. My sister without question welcomed me and my children into her home. Let me tell you, they live in a small 3 bedroom apartment, and have 3 girls of their own. That is 3 adults, 9 kids, and we made it work. Luckily again Relationship, my husband has friends who have worked on wells and they came out to help. Right now the well is working at low capacity. We are managing. A new $3k pump has been ordered and will be here mid December. We unfortunately do not have an extra $3k laying around, but one of the friends is purchasing it and allowing us to make payments. Again… Relationship. What can I say other than, Life… Lemons… Love.

I just had to add a new rain… I cannot believe what I am hearing next door. It has brought me to tears. There is a wife next door yelling at her husband, who has cancer saying, “Why can’t you just get better, I don’t have time for this. I can’t be coming here all the time!” It is taking me everything not to go in that room and yell back at her. I know everyone grieves in their own way, and I do not know their story, but my heart is with him. I pray that somehow he knows it’s not his fault he is sick, and that God gives him peace despite the situation. This also makes me even more grateful for my support system. I am never talked to that way, I am never made to feel like a burden. The only person who brings on that feeling is me. I know I try my best not to be, but I am never made to feel like a burden. I took a walk down the halls to get away from their noise. I was met with open doors and saw most patients in bed, long faced family members, and I could not help but notice the gray hair, wrinkles, and age spots adorning their bodies. I have to look away, and head back to my room. It’s too much. I am always the only one walking the halls, and the hospital with my victory staff (a name given to my IV pole), and it makes me sad. I know that every moment I am well enough to do something, I will! Every moment I feel energy, I will use it! Every opportunity I’m given to thank someone, I will be grateful. Every opportunity to feel joy, I will remember. It is these moments, where I too am in bed, unable to get passed the nausea, pain, and fatigue that I will hold close all that strengthens me, because even in my lowest moments, I will live.

Puddles:

I have ranted above, so I will keep my puddle stories to a minimum and perhaps only include the most disgusting for a good entertainment! {{You think I am joking?}} Let’s go with the puddles of spit up, urine, and vomit that I have encountered recently. Did I mention it wasn’t mine?

My sweet niece Scarlet is such a happy baby. I barely hear her fuss and she only sounds the alarm when she is hungry. She is always smiling and loves more than anything to be talked to and held. She is awfully thankful for this as well, and gives back in the only way she knows how. A warm wet mix of half digested formula is always at my disposal! You haven’t lived until you have felt this warm concoction burst onto your chest and carve its way down into the crevices of your bosoms. The river flows on eventually creating a river (if lucky), or pond in the bottom of your bra… unless that is you happen to not be wearing one and then the ooze just continues running. Bellybuttons create a nice reservoir. Really my darling Scarlet should be paid for this top rate spa service, it beats mud any day!

spit-up

Her little spa blessings don’t end there, and perhaps this is really my own fault or discovery. Really this should just be a formal disclaimer! ALWAYS wrap the dirty diaper immediately after taking it off. Do not wait, do not pass go, do not collect $200.00, WRAP the diaper! Then proceed with changing. Thank God this special spa treatment didn’t include a solid. I put the weight of my body on my hand as I leaned on the couch, I was then greeted with a urinary moisturizer! Wipes were very handy, and luckily close by.
While watching my nieces on Black Friday, I was amazed at the amount of puke a 2 year old could produce, not to mention the lingering smell. Sour milk has a way of crawling into your nostrils and embedding itself into your nose hair follicles. Luckily while I washed the thickened chunks from Kali’s hair, which she did not appreciate in the slightest, Mark cleaned the chunky white clumps that were projected on the pillow, blanket, couch, and floor. This inspired me to write a poem.

NO’de to Milk

I must admit I never liked you much,
Except when my cookies had a little crunch,
As you are drunk I hope to see you stay,
After mixing in that acid it’s truly time to pray,
I have now seen this side of you and it’s really quite messed,
I am resound to say now and always soft cookies are the best!