December 30, 2016

Tomorrow morning I go for my mammogram. I feel so incredibly tense and nervous. I’m ready for it to be over and wishing I didn’t need it. As a a cancer survivor and having a large lump again I pray for a benign diagnosis. 

Yesterday was actually pretty fun though. J had some friends from work over and one of them brought his girlfriend over. She and I got along really well. There was good, long lasting laughter in this house. Something that has been lacking as of late. Hearing my husband laugh like that made me feel so desperately sad. It’s strange isn’t it? I felt so pained for the times the have passed. We did so much together. Concerts and running around on the property. Road trips and camping. Now I’m in bed and pain. It’s crippled the house. He and I used to dance. Quite a lot actually. He would spin me and I would laugh. God, it was so fun. I miss it so much. He deserves better. I don’t want him to leave or any weird thing like that. We deserve this joy. I’m glad we had it. However fleeting, I’m glad we acted like fools and got dirty looks at bars for being too raucous and loud. Running down 6th Street and missing the bus. Knowing the cab driver took the long way home. 

We had hard times. Getting a job isn’t easy and raising a child is hard. You want the best for them. You strive to get your family into a stable situation. Home ownership and school ratings are a priority. We moved to a smaller much too conservative town. It’s beautiful here though and so are the people. They are kind. 

Having friends over was good. The couple who was here are planning to be married. I’m glad people are falling in love and dancing like fools and still being too loud. God bless ’em. I just hope they catch the bus and the cab takes the short way home. It leaves more time for that late night talk. And staring in each other’s eyes and wondering what the future holds.

December 23, 2016

Ah. I went to the oncologist the other day. It was nice out again. I bring up the weather often because I am so incredibly sensitive to it. My body is no longer able to regulate hot and cold the way it used to. In fact I don’t even sweat on the left side of my body. It’s so frustrating to try to explain. Clothing is even painful. It burns and itches. Especially on the left arm. I try to get very soft and cozy things. Being in Texas, well that’s not always the best. I also need the pressure  on that side at times. So, it will be hot and I want cold air but, I need warmth. I am just a puzzle to myself a lot of times! My body constantly in various stages and states of pain. They alter in severity and type. I am grateful my doctor’s listen. 

I go for a mammogram the 30th. I have a lump. In my other breast. I don’t know what to say. I just pray it’s not cancer. I am pissed. I am sad. Chin is up! Oh, I’m lying. Just hope it’s nothing. If it isn’t I will be furious they didn’t let me get the double mastectomy.

I’m stressed out about the new administration. I am not the only one. Their policies are not exactly friendly to disabled people or the various ways people are disabled. The ignorance is vast. My only hope is the rest of America. Please don’t forget us. I also hope that other countries know that there is a vast majority of people who are appalled by the actions of this new administration. Please know this. 

News, analysis, action

We absolutely must take this into consideration.

Heather Marsh

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In the past, media was protected in most democracies because in order to govern themselves, people need access to accurate and timely information on all topics relevant to their governance. The news needs to be the match that starts analysis and action which doesn’t stop till we have change. Otherwise it is silly to pretend that news has anything at all to do with governance. If news requires no action, it is probably not the news we require in order to govern ourselves. If activism requires no analysis, it is probably not informed or effective.

News

The first right of all people must be the right to communicate. Without communication there is no way to safeguard our other rights or participate in society. Everyone needs a voice and the ability to call for help in emergencies.

Corporate media was long ago co-opted as a propaganda vehicle for corporations…

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December 21, 2016

​The light is really beautiful today. Clouds are shifting over the sun and shadows dance . I’m enjoying the cool air and I know I am incredibly blessed. It’s the  Winter Solstice. The shortest day of the year. It makes me think about time and how short ours is on earth.

Today I am thinking of our country and other countries that are in desperate need of prayers. We must stand together against hate speech and discriminatory acts that are so easy to throw down as a safety net. We as individuals know our own hearts and must remember that in other countries those people have individual hearts too. Imagine, if you will, your individual heart being lumped in as one of hate. You know this isn’t true. You’re begging to be seen. No one will see you.  No one cares you are begging for help even as you’re pleading just for a little food.
Please, as our country faces new challenges under a leadership that, as of yet, has not been inclusive in any way, and, does not seem to have plans to be; remember, it’s the individual that matters. Do not become a member of the complicit in hate. Bigotry has a nasty way of passing the torch along. It is jokes, agreement of the way someone is treated based on race, it’s saying that it’s their fault things happen to them. People are being killed and we are seeing alt right which, let’s say it for what it is, white supremacists, rise to power. Challenge more of yourself. Watch a movie that isn’t  for you. One that has actors that who don’t look like  you. Read a book that talks about social injustice. It’s uncomfortable to talk about these things but we have too. We have to look at things from other cultures perspectives. This is America. Not just white America. So. To wrap this up. I have 2 really good suggestions in lieu of the tons of media available. Small Great Things by Jodi Piccoult. Fantastic Audible book or print. And a movie called Learning to Drive. It has that lady from the Green Mile in it. I personally am trying my best to stay aware of my words and actions. Best wishes. A

December 18, 2016

The day is frigid, but the sun is shining bright. I woke up late and we are rushing to get to church. I had gotten the call earlier this week that they would like to see me at the office. We are members of our church. We tithe and have been baptised. I love my church and have been going since shortly after my stroke which was In October of 2011. We started church in February the following year.

In 2016 I needed so much help after my hip decompression. I could barely walk before, but  crutches and a new pain after the surgery were especially debilitating. Plus I am still easily exhausted because, cancer. You can’t pick up things you drop and for me, with balance issues as it is, the danger is worse. After my stroke I was diagnosed with Wallenberg syndrome. I have depth perception issues . So when stepping onto a curb or down, reaching down, I can’t see properly. Things look farther away. It’s strange that it’s only when I bend. Or if something is grey like a curb. I guess that’s why some curbs are yellow. Hey, hey! Learned something. It also makes doing anything related to a screen really hard. My eyes just won’t focus. They slide around and I get so frustrated.

I’m in the bathroom and after slapping on a thin coat of foundation and some powder, and a little mascara, I chug down the first of my daily medicines. Glancing down I am glad to see a stray lipstick and decide to make good use of that too. With that, I head to the door and find my husband sitting on the edge of the couch and my son still in his room. 

 “Hey! Shoes on?” I’m staring at them so I know the answer.

My son traipses out, head down. In shorts.

 “What in earth are you wearing? It’s freezing and you’re not even dressed? J, did you not check on him?” I look from my husband to my son and get shrugs from both.

 ” S, go get pants, put on shoes and get ready. This is freaking ridiculous that I have to walk you guys through step by step on how to get out the door! ” Looks like I have time to put on eyeliner.

We finally get out the door and as we’re leaving I shout to our Amazon ALEXA to play relaxing music for the dogs. I know, I know. How white am i??

The drive to church is silent except for the exasperated sigh my son bubbles out.

 “Don’t start. I swear S. It is not that long and you will survive. You know how much this means to me. They have helped a lot.” My words hammer out.

My husband gives me a look. 

I breathe out slowly. “S, I’m sorry I yelled. Let’s just enjoy this and After we’ll have a nice day. It’s vacation too so don’t forget that!” I smile at my son in the mirror . He looks back at me with a jutteded chin.
We arrive at the church and find a spot to park. Getting out of the car and feeling icy blast of winter air but me, I feel exhilarated. It almost feels like home. I look to the front of the church and am surprised to see that directly beside it is a ramp with an inntertube and snow! 

 “Look S! You want to do that? “I’m excited for him. Now this is fun. I take note of the burn barrel. There’s also a real riding Tiny train made out of a lawn mower , and fifty gallon oil drums cut in half. They are painted a variety of colors. I admire the creativity and craftsmanship. There is also a petting zoo with goats and sheep and ponies. S is not going to be interested in the animals, but he does love a thrill.

Finally I see a smile on his face. 

” Sure, that sounds good. ” He doesn’t want to sound to excited so make sure to not seem to happy either. 

 “Ok guys, hurry up.” I is hustling to get inside.

We make our way inside and head straight for coffee. That done, we go to the office. I find Stephanie. 

 “I think you have a Christmas card for me?” I feel awkward but I’m kind of excited too. Maybe there is a Subaway gift card too. 

Stephanie is smiling broadly. “Oh, no this is better than that! !”

 She hands me an envelope and I can tell there is a check inside.

 “Oh…wow. Thank you so much!” I’m stammering and shocked. My face feels warm. “This is amazing! I just. Wow!”

J is saying his thanks too. A lot better than I am. Thank goodness. I start to go in for a hug and at the last second pull away. Not everyone is a hugger. Her smile is warm, her eyes alight and genuine. Church outreach is a calling and not done for the salary. 

The music is starting and that’s our cue to find our seats. With a final wave we pick a seat right in the middle of the church. 

The sermon is wonderful. They always are. Afterwards we make our way out to the snow ramp. Children are climbing the steps to the top and sliding down joyously. Their faces are beaming and laughter rings out. The smell of the cedar burning is pungent. S takes his turn down and returns to us bouncing up and down.

 ” Did you see me?! ”

J and I smile at each other. We can, for a minute, just breathe. We enjoy seeing this boy. The one not relentlessly worrying about school. We enjoy us, away from household chores. We enjoy, that thanks to the generosity of others, Christmas will be amazing.

After The Mastectomy

This is so exhausting to relive. I didn’t live it the first time. I was in denial and a kind of shock. It was like watching someone else. I am so sick from the stroke anyway. Just to give you a brief idea. This is important to know because otherwise, I sound strange and displaced. I am sick always. People don’t know that stroke is a disease. Learn more about strokes here. 

 I had a brain stem stroke. My life, I have to face it, it is not what I wanted. It is still an amazing life.  I have become severely disabled. Physically and mentally. Some days are so much worse than the others. I will maybe share more of that later if interest is shown.

 My mastecomy was over and I had my first chemo scheduled.  Here I went over my notes

I had my first chemo March 31st 2015. I was being treated for mixed typed triple positive Her 2 positive cancer. I had DCIS and IDC breast cancer. It was Grade III Stage II A and Stage II B. My chemo was a mixture of Perjeta, Herceptin, Carboplatin,and Taxotere. I would have Herceptin for a full year. My doctor was fantastic and I loved my nurses. You start to form a real attachment to them. They are the ones who answer the little questions and get your nausea medications refilled. They know everything! I am so grateful for the nurses at my clinic.

I was very sick. A bundle of anxiety, a wretched stomach and headache’s you can’t believe. Chemotherapy is painful for some and I’m one. My stomach hurt so badly. My stroke was made worse. My left side always feels like it’s on fire. It burns and tingles. It goes into the back of my head. Then the right side of my face is numbish. Like say you went to the dentist and had a tooth pulled. It’s like that with shots of pain in my eye. It turns out that chemotherapy makes this worse. I also have left shoulder pain all the time. Sometimes it feels broken. Usually it’s just this horrid pain that lingers. 

I never vomited during chemo. I shaved my head before my hair could fall out. I wasn’t waiting for it. My sweet sister shaved hers too. Dammit she looked cute! 

Around 5 months into it I noticed I had a lot of hip pain. This is not unusual. For me, it turned out to be a whole lot different. To kind of put a pin in this part, for the time being, in the past year I have had a core needle biopsy, mastectomy, salpingo oophorectomy, port placement, breast implant, modification of my reconstruction and a hip decompression. It’s been depressing, joyous, encouraging, enlightening. I don’t know what to share or who would even want to read it. I just wanted to give it a go. 

I blocked out chemo

I never went to the oncologist in between my mastectomy and diagnosis of cancer. I just wanted the surgery and recovery. I didn’t want to think about anything else. So when he told me I needed surgery  my husband and mom listened to details I don’t remember. I did ask if I could have a double mastectomy. I was told no. Based on my biopsy.  I didn’t push for it.

I was so incredibly sad that I was losing my breast. I didn’t know if I wanted reconstruction right away though. I just wasn’t sure yet. I wanted to keep myself. Mine. I deserved to be whole dammit. My brain was already battered and bruised. Now this. I gazed in the mirror for a long time the night before. When I changed before surgery I tried to avoid looking again. I felt like I had already said goodbye. My body. It had betrayed me again. I loved her so but was angry. Goodbye was done.

My surgery went well enough. I had become concerned when I was still awake in Operating room. My arms were strapped to the sides of the table and everything. I am thinking, hmmm, this is strange. I was having a conversation with the doctor and  they thought I was going down. The anaesthesiologist was shocked. Recovery was incredibly painful for me. I think I have the so called “red hair Gene”.  My dads side is all red heads. They gave me morphine and it didn’t do squat. I sat there. Feeling the red hot sear . Blinking and my eyes just felt like sandpaper. It was awful but I started to get loopy.

Yes that loopy. I look pretty good for a major surgery. I never did go to sleep. That came later. Once I was home and safe in my own bed.

Festive Queso Dip Soup

I made this last year after we had leftover dip! 

  • 1 C Queso Dip made with Rotel tomato and Velveeta
  • 1 box of chicken or vegetable stock
  • 1 can of black beans rinsed
  • 1/2 C shredded chicken (optional)
  • Sour cream and shredded cheese for topping to taste   

    Heat the Queso on medium heat and slowly add the chicken stock until combined and bubbly. Add beans. Simmer about 15 minutes or until heated through. If you want a thinner soup add more chicken stock or water. If desired add cooked chicken. Top with cheese and sour cream and tortilla chips.

    The Middle

    After finding the lump in my breast I was terrified. It was the day after my birthday. I was scheduled to see my regular doctor anyway. Being a stroke survivor means a lot of appointments. I could tell by his face he was worried. He immediately told me to see my gynecologist to have him check it too, but he also has tracked a mammogram.

    I broke the news to my mom that I had a lump.

    “What do you mean? What kind of lump? Where?” She asks in a flurry of words that mark her worry.

    “You know how my boobs keep getting hard…well now there’s a lump. A big one. Like on the side.” Saying it my throat feels tight. I want to sound brave.

    “It could be a lot of things though. A cyst, fat nodules….”My voice trails off. Cancer has been whispering in my ear for days now. I poke and prod at the lump so often it’s bruised.

    Finally the day of my mammogram arrives. I have concluded that the whispering is wrong. No one believes I could have cancer. I am wrong that I have cancer.

    The facility is nice. I almost feel like I’m heading for a spa. There are nice wooden lockers that have famous Hollywood starlet  and political names on them. I choose Eleanor Roosevelt. After securing my clothes in the locker I enter the room. This is not what I expected. The machine is huge. The technician is kind I find the machine which rotates to take 360 ° pictures of my breast tissue, amazing

    Afterwards the technician tells me to wait. They are waiting on a doctor from Fort Worth to review my scans. I am thinking this is odd but I’m not too freaked out. After all, it could just be to calm me down.

    In the meantime, I am told they want me to have an ultrasound done. This is completed and I hate how this lump seems to grow larger by the second. The tech for this part is very quiet. Her only comment is to say that the mass is large and doesn’t move.

    It’s not long before the mammogram tech and I are in a small room with a black conference telephone between us.

    “Ms. James, we are very concerned with your mammogram. It shows a large an mass. It had uneven sides. There are also several small masses. We need you to have a biopsy.” She said so much more calm and conciliatory.

    The technician is walking me out and I’m trying to process this.

    “So… it was bad? I have cancer?” I am lost.

    “I can’t tell you that but we  don’t ever make the call from Fort Worth like that… You will be ok. You’re young.” She adds the young part like it matters. I know it might, but am sick of hearing it.,

    With that, I thank her and walk out with my copies of the mammogram results.

    My biopsies are done and the results take forever. My mom comes to be with me. I get my official diagnosis of breast cancer. The tumor is 3.8 cm and has a feeder tumor attached. There are several small tumors scattered throughout. Due to the size and scope, I need a complete mastectomy.

    My thoughts are fuzzy and confused. I was angry. I was looking for a reason for the cancer. I was ready to have it out. Strangely, I comforted people around me, but was also a complete bitch. I lashed out. I screamed at my own mom in the town square. I needed to know what kind I had, because until you’re diagnosed you have no idea how many kinds there are. I would find out.

    A few thoughts…

     Times Magazine Person of the Year is Donald Trump. The person who has had the most influence in the world. I wanted to address why it shouldn’t be called man of the year as he called for at his rally. This isn’t about being PC. It’s about the recognition that we, as women, have fought hard for. It seems the attitude of women in America is to just let this slide by unnoticed or even be applauded (as was done at the rally). When the time comes that you are treated the way you are A- ok with being talked about, the song won’t be as sweet. Go ahead and sway with the masses. Be proud that you are so enlightened you don’t need your femininity acknowledged. Once we ignore our own womanhood, we give a loud and clear message. It doesn’t matter to us. It will be ignored. So will you, your rights, your health and any thing you happen to decide is important. When you decide you want a divorce and he has remarried and you’re single. Guess who will get the kids? Not you. When your daughter or son complains of being bullied by others at school, you will have no say. Part of the new world is bullying is socially acceptable. If your sister is sexually assaulted the question of what she was wearing is the reason he was looking. After all, a woman should know that wearing those kind of clothes makes a man crazy. If the assault results in a pregnancy, it was meant to be.  Does this sound outlandish? Lets check back in a year and see where women’s’ rights are.  This is the new world. 

    We can stand together as women. We can as mother’s, daughters and sisters say no to this rhetoric. Allowing ourselves to be dismissed is not what we should be about. We work equally as hard and deserve equal respect as a man. We have to stand firm in our belief systems lest we forget. It goes for us, LBGT, religious groups, and all nationalities. The threat is real and not going away. Does this mean all men are hate mongering sexist pigs? Of course not. Perpetuating a culture that accepts sexist, misogynistic, xenophobic, and racist ideals as the best of social norms is dangerous. What is even more worrisome is the outright fear people have right now in even speaking how they feel. Not only that people are reading false information on the Internet and believing it as truth because the source is a person in power. When you are an authoritative person in power you must be wary and vigilant in what you know to be true. These are hefty responsibilities and I for one don’t trust the ones about to be in charge.