The CrossFit Cure-All

Seriously, CrossFit Second Nature has saved me from myself. It's been a little over 4 months and the changes in my state of mind are positively enormous! There is a magic to CrossFit unlike anything I have ever known. I walked through the doors to CF2N like this: I was broken, mentally, spiritually & physically. I was afraid of everything-cancer left my body but fear remained. Joe turned his back on me and offered nothing during cancer treatment (and into today); no support, no love, no kindness-I was unsteady and insecure toward other people thinking everyone would reject me. My family was so far away and I never want to interrupt their lives-I missed the help & care I would have gotten if we lived closer. My daughter was 15 and I, only, wanted her to see that I was living and not dying. The VA was stressful and creating a divide in me between loyalty & self-preservation. The past year has been a battle between what was happening in my life & what I wished was happening in my life. Destructive behavior manifested. I am not exaggerating when I say that CF2N had healed many things and lit the path to many more. I am relearning confidence, positive self-esteem, team building, self-acceptance and letting love grow; to give & receive. It seems all this would be secondary to the physical fitness but for me, it has been primary. My physical state is the best it's been in 20 years!!!! I am giddy with delight in regards to my physical state! Today, I was coached to handstands during the WOD! Last week I completed 81 box jumps! I can lift more than my body weight in a deadlift! Chad had me sprinting-yes! Sprinting!!! And jumping rope, and doing BURPEES, push-ups, and much more!! I am thinning and becoming lean, agile and strong.  How does all that happen? It's the magical combination of hard, physical work, the act of being humbled, being surrounded by people who care, being taught & nurtured by people who have travelled a similar journey and reaching for goals (seen & unseen) with people reaching for themselves as well as for you! 

UPDATE LONG OVERDUE

IT HAS BEEN TOO LONG BETWEEN BLOGS

 



     It has been a stressful couple of weeks since my last blog. Work, car, money, home...way too much stress for me.

     The Saturn is, still, sitting, unused in the driveway. Joe and I have been going to LA to take me to work every day. Then, he returns to Newhall and takes Natalia to school and himself to work. He picks Natalia up after school, come to the Federal building, I drive him back to the Van Nuys airport, get Natalia to showchoir, dance or whatever function she needs to get to then back to the airport to get Joe. I can't get any school work done on time. I'm exhausted. So, why is the Saturn not being driven? Because it didn't pass the smog test. Joe and I split the mechanic's bill to fix something with the spark plug (I don't remember what it was) after the first smog fail and that didn't take care of the problem. The 2nd smog test failed, as well. I spent the last of my paycheck on the first repair. The, nearly, $500 ticket for going through a red light and the $300 registration didn't leave me much to spend on the car. Joe said he was broke, too. He told me that when his income tax return came in, he would use it to get the Explorer, in the garage, fixed...that's not going to happen. He changed his mind. He said he would use part of his return to get the Saturn fixed. I don't know where the tax return is. I'm not surprised. Every man I have ever been with have been anxious to get the bucks for my children and me as deductions but, then, I never see a bloody red cent that they promised. Anyway, the Saturn sits and we run the other one into the ground. I was paid this past Friday and after phone, storage, WorldVision, hospital and doctor bills I have $200 left to put on the car. I'll see if I can pay less on a couple of doctor bills in case the car bill is more than 200. I HAVE to have my car. I have my suspicions about this whole car thing...I'll keep it to myself, for now. 

     Suddenly, Joe is in control of my air conditioner in my room. He's been coming into my room and turning off my A/C and opening the French doors. It wakes me every time. I have a hard time sleeping when I am not cool with the hot flashes and it isn't cool enough outside to satisfy what the A/C can. After he comes into the room I can't fall back to sleep; I am hot and sweating. It's, usually, 3 in the morning before I can doze off. I'm tired before I start the day. The stress at work and the running after work makes me so tired I can't get my homework done nor exercise. Well, I had enough! Last night I locked my door. Joe was so irritated that he began texting me - repeatedly. Then, knocking on the door and calling my name until I woke up and went to the door. He started saying something about the door being locked and the A/C running. I wasn't, quite awake, and I was dumb struck, as well. I heard my phone alert me to another incoming text message but, I ignored it as I stood in the door waiting for Joe to start making sense. Then, he said, "what's going on, you got the door locked and the air conditioning running. I'm beginning to worry about you, what's going on?" All I could say is, "what??"  He was saying it in a way that he was trying to cover himself for being so fricking anal. How dare he come into my space, wake me up in the middle of the night, and decide if I use the A/C or not!!   I am, continuously, amazed at his lack of rationale and common sense. What is he thinking?? He was yelling at me over the phone tonight because my daughter calls him 'cookie' as a nickname. This is a nickname she has called him since she was 7 years old. I have called him that, too. It's something created out of love. He decided that the nickname is stupid and that until I make Natalia stop then he's going to call me 'Heather' instead of 'mom' around her. I told him not to do that. One has nothing to do with the other. I am her mother and 'mom' is my name. He asked what the big deal is. I told him he is trying to create a disconnect between me and Natalia and I don't want him calling me 'Heather'. He flipped! I guess because I hit the nail on the head. he isn't aware that I know the head games he plays for power and control. He kept kicking me until I told him to stop being abusive. I told him that something must have happened at work and he's taking it out on me. He admitted he's playing manipulative, control games and that that is too bad. He can't play them if I'm on to him. Why is he acting out more than usual? I haven't let him push my buttons and make me upset in a long time. I was upset when he pulled the $40 stunt in the car on the way to the oncologist and, even though, I was not in the wrong and he was playing a power/control game I apologized. It's not worth staying upset over. Maybe he's wound up because I'm seeing Dr. Schmit on Monday and he knows how much I like Dr. Schmit. Joe had confronted Dr. Schmit all those months ago and has never let up. The more I express my respect and admiration for Dr. Schmit the louder Joe refutes UCLA and contemporary medicine. All the same ridiculous babble he spouted in the beginning of this journey. Internet web education. Yea, that's going to change my mind about cancer treatment options. No thanks, I'll stick to medical journals - published ones. 
     He's been telling the flight attendant all his woes. Evidently, he has her believing he's a nice guy and that I brought all kinds of baggage from previous relationships and take it out on him. That's what I got from the conversation we had yesterday. Joe's the 'nice' guy and I'm a horrible person. She's defending his lack of sympathy and compassion for me (his discussions with her, not mine) because he was scared. Really?? She defends someone walking away and ignoring the basic needs of compassion for someone with cancer? Really? He must have weaved some wild tales to get her to take that stance. NO ONE understand that position, AT ALL. Whatever, right? It's his story to his friend. However he wants to spin it so he can sleep at night.
     As far as Joe is concerned, I'm feeling defeated. He's not changing. He will not change for me or our family. The cancer, the treatment, - no matter what I do for him and no matter how much I love him, he's not going to give it in return. He's only going to hurt me and abuse me as he always does. He will not let God  touch his heart and charge his spirit. Through all of this I have given him everything I have and, then, reached within myself and gave more. I loaned him the love I have for others on the bet that he would return it ten-fold. I lost the bet. 
     Dr. Glaspy had interesting thoughts on our last visit. I need to hear more of his wisdom and confidence. 
     I also, need to be with the ladies of the church! Today was so amazing! Darlene picked me and Natalia up and took us to Acapulco restaurant for lunch with the ladies of New Zion. They were having the lunch for my birthday. It was, absolutely, wonderful! The food the conversation and the presents. Ha ha. They were, all, so generous and thoughtful! I can't thank them enough for this blessed birthday.       
     Marsue sent a, very, pretty piano to hold small pieces of jewelry with a note that I never forget our adventure. :) - A little reminder of our joint venture to connect the Liberace dots. It was fun. I hope we do more of the same with...say...Errol Flynn? Fun!
     My birthday at work was very nice. Darlene brought delicious cupcakes and an inspirational t-shirt. Bryan, Scott and John went to lunch at Veggie Grill with me and Bryan bought my fake chicken taco. Leroy gave me movie tickets. It was a nice day all around!
     I know I jump around in these blogs and there are times when the grammatical errors, nearly, make the blog unreadable. I thought about going back through them and editing but, that would take away from the truth of it. That is my state of mind and my ability (or lack of it) to process through words. Every missed comma and/or misspelled word is part of the story - my story.                                                                                             

Thank God.. .

...NOTHING CATASTROPHIC

My physical self has been as well as it can be. It has been, nearly, 3 weeks since chemo and,  although,  I feel well but my body is weak and tired. I can't force it to not be what it is. I can sleep 12 - 14 hours. My thighs burn just walking up the stairs. The slightest stretch pains my hamstrings. I can't close the hatch on the Explorer. Weak and tired. My skin is grey, thin and blotched. I am the ugliest person I know. 

Mentally, wow, I'm slipping like I did when I was first told I had cancer. I'm feeling like I have 5 years, tops to live.  I can't see myself old. It makes me sad. I can't imagine myself healthy like I want to be. I see myself jogging and fit,  happy and content but I can't see the road that will get me there. I am frustrated and sad. 

My school work is fine. I'm getting hits for format errors in the APA assignments. I don't care. I know exactly the errors as they happen. I'm rushed and sick and I know the paper I'm writing will still earn an A. So why does it bother me that the instructor hasn't figured that out? 

That's it. I'm tired. 

CHEMO SCHMEMO

IT GETS EASIER

 

Yes, I've got the last round of chemo's after 'glow' in the back of my mind but, I also know I made it through. There are doctor's and nurses who are ready for things like what happened to me and they know what to do. I pulled through just fine. This time, I'm drinking water, water, water! I loaded up on anti-nausea (sublingual & on the tongue)from the pharmacy and I'll do what I can to prevent a repeat.

 

Doctor Cohen was surprised my white blood cell count was fine today! After everything I went through and no Neulasta. I can only say that my diet is helping, the Ensure a couple times a day, and exercise with fresh air and laughter with my Natalia. Of course, Joe was so instrumental in getting me through the emergency room ordeal. Ultimately, its what goes on in my head. Do I let myself think about the worst that can happen or do I go through my day knowing that it can go all wrong and forge through, anyway. I forge through anyway. I know the pain is coming. I know the thoughts of quitting are coming. But, I also know I will forge through. I will go to work and do what I do. I will take of my daughter and she, in her way, will take care of me. Everything has its place; church, school, family, etc. But, ultimately its how I process inside my head.

 

"Resilient", was what Dr. Cohen told me I was after I let her know how quickly I recovered after the trip to the emergency room. I told her I went to Universal the day of my CT scan and hiked to the top of a trail last week. She was happy. So, things happen but how do you recover? I take it as it is and accept it, then, forge through it.

 

I watched "Lone Survivor" while in the chair. Talk about forging through. I am so inspired. I could relate to Marcus' code and the code of the Seal. You know there's going to pain but you get through the day and go on to the next. You know there are going to be very dark times but, you get through the day and go on to the next. You believe in what you're doing. I'm going to get the book.

 

Nothing weird with the chemo. I got my bags of chemicals and then I left. I took Natalia to her school to get her package with all her registration info. I ate a tomato wrapped in tortilla and took a nap. Then I went downstairs and took out the trash and flipped the breakers to run the upstairs AC. I made Salmon but didn't feel like eating it. I ate a couple spoonful's of peas. Now I'm back in bed. Work tomorrow and lots of school work to tend to! Last week of this class.

 

My hair is the same. I have muscle aches and a little weakness in my thighs and upper arms. I hope it doesn't get worse than what it is. I can tolerate it this way. We'll see.

 

My skin a atrocious. I'll, definitely, need something done to the skin on my face when this part of chemo is done. I'm searching around, now, for someone local but there is Dr. Nassif and Dr. Dubrow. If only!

 

Well, I have to go back downstairs and take my dexamethasone. Great, I'll be up in the middle of the night.

 



Can it be? An uneventful week?

It is an awesome feeling to look back and realize It was almost a completely normal week!

 

I tend to look at the bright side, the positive, because of the intensity of the alternative. So, in my, immediate, memory I think of the day at Universal and the way I felt that day. I think of the hike up the Towsley-Newhall Canyon View trail that Natalia and I climbed a few days ago and the way I felt doing that (great, by the way!). I think of the amazing change in my confidence to be around other people when I started wearing my beautiful wig. I revisit the conversations with people that made me feel elevated and happy. As a result, I give the other feelings little attention until they push their way to a place in my head and body that can't be ignored. The depression and disappointment can become me, It is who I am, at times. It's bigger than a feeling or a thought because it can't be doctored or costumed. It is me. I feel an evolution taking hold. The years I have spent cultivating my pearl of a personality - gone. It feels more honest, though. This is me. This is where I am comfortable. This is the me that calls a pig a pig. I don't go out of my way to hurt anyone but, you will know when you have offended, hurt, or, otherwise, are inappropriate. As my boss, you will know when you have treated me unfairly or if your tactics are borderline illegal. As a person that sends mixed signals, I shall say 'fuck you' and put you in a place that means nothing to me. For the ones I have spent so much time building a relationship that you so, easily, discarded I see you for who you are. Suddenly, it all becomes clear. There are no rose-colored glasses nor a desirous being to cloud the reality of anyone or thing. If you are a pig, I see you as a pig. It doesn't matter what I thought of you yesterday once you have been revealed it all goes away never to return. No one can redeem their image once I see them for who they are (this includes situations as well as people). I see my situation at work for what it is, too.

 

Maybe this makes no sense to anyone but me. Maybe it isn't meant to. This is where my journey is taking me.

 

My face is a source of discomfort for me, now. The indentation in my forehead from the reaction to Neulasta is not going away. The aging of my face and the lines in my skin are getting deeper. There is nothing I can do. There may never be anything I can do. This acknowledgment has resonated deep within me. It is a part of the catalyst to change. I looked in the mirror and my refection lit the fire to my uncovered me.

 

I am having chemo tomorrow. Number 5. There is a bit of apprehension because of what happened after round 4. But, I am anxious to get it over with, as well. Just get it done.

 

I went for my 3 month check-up with Dr. Demanes. Everything went well. No problems and no issues. We are, both, very happy with the treatment and the recovery. As we are talking the word 'guinea pig' comes up and the doctor tells me a story of his trip to Peru. The delicacy is guinea pig! He told me there is a portrait of the "Last Supper" in which Jesus is eating for his final meal..yes! A guinea pig! I laughed to hard. He did too. What a great story! I will revisit in 6 months. 

 

As I was exiting the doctor appointment, at the front check-in desk, a woman was standing behind me stopped me as I finished up my business. She was frail and on a walker but was probably my age. She explained that she overheard me say the Dr. Schmit was my doctor and she wanted to ask me a few questions. She was the patient of Dr. Chang but, due to circumstances beyond her control, was passed on to Dr. Schmit. The woman said that Dr. Schmit had nothing published and was listed as a general surgeon, board certified, but not breast cancer surgeon board certified and she was nervous. I was so honored to have an opportunity to tell her about my experience with Dr. Schmit. I told her not to worry. I explained what I had done and how he treated me. I told her she was in good hands and he would take, equally, good care of her. I told her he was the doctor that would discuss the options and let the patient make decisions on her own care so long as her health was no jeopardized - and, then, he would explain why it put her health in jeopardy. I tried to tell her all the things about my experience that would calm her and let her go into the appointment with an open mind. We  hugged after several minutes (ten, fifteen?) and we exchanged names (I didn't write her name down and it was not a name I have ever heard before). Her husband would, periodically, nod behind her as I was talking as if in approval that the things I was saying were helpful. I am glad. I left the building hoping that it worked out for her and that she would appreciate Dr. Schmit as much as I do.

 

It has been a pleasure driving the explorer to work and back! Thank you, Joe! Joe left Tuesday and won't be back sooner than Friday but, may be away longer, still. That sucks.

 

Natalia is enjoying her ballroom dancing lessons at D'Wilfri studios in Newhall. I am enjoying her enjoying them. :) She is doing great! She played me a couple songs on the piano and sang along for the first time. She impressed me, immensely!!!! I am so proud of her. She is self-teaching the piano and she tried to show me a few things. We laughed because I am not doing so well. I told her it's probably a mental block as for years my mother insisted I would be good at the piano because of my long fingers. I grew up with a piano in the house and the cat strolling across the keys sounded better than I did. A small, 16 key, organ for Christmas did nothing to encourage my playing, either. I could, probably, learn but it would be at a snails pace.

 

School is going better. I had to miss an assignment but I am hustling to make up for it and work the other discussion, journals and assignments the best I can. I want to finish my master's reflective of the student that I am - not the student that I am temporarily!

 

Oh well, its nearly 0200 - thank you pre-chemo meds :(.  I'm almost ready to go back to bed. Natalia has been sleeping with me since Joe left and she spends her days in there when I am at work. She said its the only place in the house that makes her feel comforted. That made me feel good but not so good that that was the only place in the house. I thinks he misses Joe. She is 15 and entering the years that will challenge her emotional control. I'll do whatever I can to help her through it. I'm sure Joe will, too.

 

So, in conclusion, I'm exhausted and not sleeping, tired (metaphorically) of wearing a cultivated personality and ready for this part of chemo to be over!!!



My Eyes Opened to the Beauty of Light

The Light of Day

 

A restless night of bone, joint and body aches was followed by a slow appearing streak of light that shone through the cotton curtains. In the fold, there was a stream of light along one panel of the pretty white curtains that adorn the French doors of my bedroom. The fold, moved gently with the air that passed through it from across the room. My eyelid peeled open, on this spot, and watched the movement -saw the light. There, I stayed feeling no urge to move or alter the view. So pretty was this image. My body was limp and haphazard on the bed with one eye, barely, open and the other in the pillow. So appreciated was this view. There was nothing else for as long as I allowed. Then, my ears welcomed the chirp of birds to accompany the view. Chirping, sunlight, movement. Time ticked and the noises waved in; the truck engine turned, the dog barked, and the mower chugged.

 

I willed myself to the bathroom and was shocked that the toilet bowl filled with blood. Was it a menstrual cycle? There was nothing spotted or leaking, but, the bowl was red. I felt no pain - no cramping, no back pain, nothing. I went downstairs and drank black, decaffeinated tea followed by a glass of water. Bathroom, repeat. I stopped the tea and went to water. The bowl filled with blood each time I went. I called Dr. Cohen and she advised I go back to the emergency room (kidney stone, perhaps) and then, when I told her I had no pain she suggested I drink water and see her tomorrow. I've had kidney stones before. During that episode I had a one-five minute episode of extreme pain that dropped me to the floor of the dining room. That was it. I was seen by, first, a doctor in Beverly Hills that wanted to throw in a breast exam with my visit and, second, by a doctor at Cedars-Sinai. The latter had invented a pill that expanded the urethra so the stone could pass freely - it worked. I've had other stones. They have caused discomfort but, never enough to alter my day. I have not experienced the large amount of blood in my urine. This is a first. I'm not convinced it is kidney stones - kidney related, yes. My nausea has been here and there all day along with the bone pain. My urine, as of now, is still red but, there is more clear in the mix. I keep drinking. I meander from the living room couch to the front room couch back to my room. There is no comfortable place when a body feels like this. It, just, doesn't exist.

 

But, the beauty of other things is comforting like it never was before. I delight in the yellow flower, the blueberry and sunlight. Never has there been such beauty for my eyes to see. I haven't seen such sights for as long as I can remember - veiled with the darkness and sadness of so much misery I missed the wonder of a yellow flower.

 



I FELT DEATH COMING

DEATH WAS COMING FOR ME

 

There was an awful period of time, yesterday, that I could think of nothing but the moment - the agonizing moment, that I was in. I crawled around my bedroom floor and sat around the tiny wastebasket and back to crawl a foot or two and on my knees leaning over the little wastebasket. I was in so much discomfort I couldn't cry. Heaving yellow and, then, dark brown, into the miniature can and the pain shooting from my lower, right back to my abdomen. I was sweating and I was cold and I was reaching for water and the heating pad...and heaving, heaving. I would stand and walk hunched to the bathroom in time to heave into the toilet bowl or the sink or the wastebasket. I never felt my feet touch the floor. No time to grab a scarf or hat - no thoughts about such things. And, the blood from my uterus. Dark and red filling the bowl as I heave into the wastebasket. Back to my room, the same way in which I left, I grabbed at things, the book, the pillow, the stool and found my phone...no glasses, I couldn't see what I'd type. I started pulling on my sheets, from the floor, and my glasses fell beside me. Heaving, I held onto my glasses. Pause, I could only text 'help me' to my daughter. An eternity later, she sent "with what". I could not cry and I could not say. She came to my room at one point and asked what was the matter. I don't know what her mind saw. I asked for Joe. He knocked before entering. I told him I couldn't stop throwing up and the pain was too much to bear. I don't know what his mind saw. He used my phone and called the office of Dr. Glaspy. The answering service was irritating him and he became upset - he raised his voice and told her to stop asking the same questions! Get the doctor! Dr. Cohen was on call. She said to try and get the anti-nausea pills down and Tylenol for the pain. She apologized for the terrible turn of events. She talked about alternative ways of getting anti-nausea into my system. She hung up. Time passed and I tried to keep the pills down - I couldn't. The pain was now in my throat and the reddish/blackish goo was heaved into the little wastebasket. The pain was worse. I called Dr. Cohen back and she told me to go to the nearest Emergency Room. I texted Joe "pls". He came in and got my things together. I hunched and floated to the bathroom. He asked me if I had another shirt. I don't know what he was seeing. I changed into something - I don't remember. Joe went to the car and started the air conditioning - I don't remember. In the car I heaved into the zip-lock baggie. There were not thoughts except that I was in terrible pain and I was going to die. I was dying. I was dying. All the petty things that weighed my heart and my mind the day before did not exist. I was dying. All the petty resentments and feelings of neglect - gone. I was dying. Nothing matched the weight of dying. Nothing is as important as the moment you die. I have never not thought about the other person - the thoughts, the feelings until I knew that I was dying. In that moment I was completely selfish - for the first time in my life - with my thoughts and feelings. That bumpy ride to the ER that I don't remember except for the bumps, I found myself to care about. I gave me, only, to care about. In that moment. I wouldn't laugh because someone wanted me to, I wouldn't cry because someone walked away from me, I couldn't cry for another. And there was Joe. In the distance he was talking and helping me from the car, carrying my bag, holding me upright, helping me into the wheelchair, answering the questions, and in the room "I hate chemo", he said to the nurse. If only it was the chemo - I was dying, I heard in my head. And then the IVs, the blankets and Joe leaning over me to keep me warm. Fixing my head covering and pulling my sweatshirt together around my shoulders. He was kind to everyone and they were to him as they were in and out of the room. He texted Natalia and cartoons were on the TV but he leaned over me to keep me warm and I glanced at this phone - stock market graphs and I was at peace. Some things were said to me and I could not respond and I didn't try. I couldn't respond to make someone else 'okay'. Hours later I looked at Joe as he was fixing my blanket and he said "you're eyes are green when you're in pain". I nodded. Something my mother told me when I was giving birth to Stephen. The pain in my back and abdomen was her pain. Before she slipped into a coma, she looked at me and was in such pain, in that same area. Her eyes were desperately pleading for me to do something. She was dying. And then, she died. It was a few days after her piercing pain and, then, coma but she died. I was dying just like she did. In that moment of dying I couldn't call God, her, my father or my beloved JoeWildhaber. The pain of dying robbed me of any moment that would allow me to call on any of them. But, Joe was there - right there. He filled that gap and that made it okay. I didn't need to call on anyone, he was right there. And when the IV bag was empty and an injection was given, I was told to take 4 pills of potassium. I did but my esophagus is tender. But, I did. The nurse brought me ice water and Joe said "is the ice okay for you?" - he knows I don't drink ice water but, I said it's okay. And, soon we were going home. I was not dying - not yet. It WAS the chemo. Cumulative, I heard someone say. The effects get worse the longer you are on it. The seat of my pants was wet, like I wet myself but I didn't. Just the outside of the pant seat. Joe said it wasn't noticeable and we walked out slowly. He held my hand and helped me in the car. I thanked him for wiping the vomit from my mouth and the tears from my eyes. He told me a funny story about a guy in a leopard print speedo that he helped from a car accident - he covered him with his coat as the eyes all went to his speedo after the paramedics cut away his clothing. At one point along our drive he reached over and rubbed my arm and said "I love you".

 

let it go – the
e.e. cummings
let it go – the
smashed word broken
open vow or
the oath cracked length
wise – let it go it
was sworn to
go
let them go – the
truthful liars and
the false fair friends
and the boths and
neithers – you must let them go they
were born
to go
let all go – the
big small middling
tall bigger really
the biggest and all
things – let all go
dear
so comes love

THE DAY AFTER THE DAY AFTER TREATMENT 4

OKAY, ANOTHER UNEXPECTED LITTLE TIDBIT

 

To My Last Period by Lucille Clifton

Because the year has come to an end, and I am sitting at my desk trying to reconcile the old with the new. Another beginning, starting today. But first, a proper farewell to the year that was:

To My Last Period
Lucille Clifton
well, girl, goodbye,
after thirty-eight years.
thirty-eight years and you
never arrived
splendid in your red dress
without trouble for me
somewhere, somehow.
now it is done,
and i feel just like the
grandmothers who,
after the hussy has gone,
sit holding her photograph
and sighing, wasn’t she
beautiful? wasn’t she beautiful?

I wept yesterday, as I agreed with Clifton. Today, I was awoken by cramps and a deluge of red in the toilet bowl. I don't, really, know what to think about all of it; the hair, the periods. Is it a blessing? Someone looking out for me? I just remember talking to Marsue on the phone, from my living room, and a feeling swept over me - strong and sure and I said to her "I'm not losing my hair. It will thin but I am not losing my hair". I had no doubt! I wasn't as sure about my period but, I was pretty sure about that too!

My other aches and pains are moving in slowly (my mouth is dry and feels like I have been eating dry ice). I have to get homework done while I can - a day late! I journaled into the wee hours, though, as my new stand-alone A/C worked it's magic keeping my room comfortable!! $299.00 at Target and worth every penny!!



There aren't enough Lorazapam in the world...

God Bless Drugs...But When They Aren't Enough...

 



Chemotherapy today. Natalia went with me and took some funny short videos that I will try to post. It was nice having her with me but, I felt like she was uncomfortable. She never left the chair (not the most comfortable) except to go to the bathroom and stretch out in my lounger while I was in the bathroom. Even though my Benadryl was cut in half (my request) I was still drowsy and fell asleep to Monument Men on my iPad. I was WARM, though! I brought my faux-fur electric blanket, zip-up hoodie and pillow! I was WARM. I told Natalia to dress warm so she wore a very warm flannel jacket but with shorts! haha. I doubt she'll go with me next time and that's okay, I appreciate this time!

 

I received terrible news two days in a row. Yesterday, my niece, Melissa, told me that her husband is scheduled to see a "cancer doctor" next week. She is devastated. He seems of the opinion that it is out of his hands and he goes on. I know that Melissa is thinking all kinds of things and her emotions must be all over the place. As we texted, the not knowing is the worst. This time, in between being referred and test results is a dark hole in space and time. You do nothing but defy gravity and float, aimlessly, with thoughts that shoot like stars in and out of your mind. Here, one does the most thinking and tapping into corners of the mind that had been untapped for years. Its as if colors are vibrant and sounds are amplified and nerve endings come alive - simultaneously. Nothing can settle any of it. Everything works its way back down as one goes through the process of talking to doctors, taking tests, hearing results and making a plan. She has been so good to me during my ordeal with cancer; she talks to me frequently, asks how I'm doing, listens to me and laughs with me. I love her as my own and I will be with her every step of the way. If I were living nearer to her I could do more, but, I will do what is possible from 3,000 miles away.

 

My other terrible news; there is someone I care deeply for that I met a the VA. He has always been very nice and was the first to introduce himself to me when I began work as a NPWE. I sat by myself in IPC and shuffled paper - head down, focused on the task. I made no attempt to greet people or engage in conversation as I was always learning and trying to pick things up in a passing conversation or found notes someone neglected to put away. I was a knowledge scavenger, of sorts. But, he was persistent and asked what I liked to watch on T.V., if I ever ate lunch and how did I like what I was doing, etc. We became friends and would go on walks at lunch or have lunch together. We met outside of work and he met Natalia. He came over to the house a few times and watched Natalia play a video game, he watched TV with me and after my surgery, he came by to see how I was and was quite wonderful. He insisted I was standing too much while talking to him and said I should be sitting - that sort of thing. We talked and texted on the phone, day and night, and we were open to any conversation. He has been very supportive and caring. He looked into apartments in Santa Monica for me when I told him my daughter and I were thinking about moving so I could be closer to work. We IM'd at work and made each other laugh. Now, he doesn't want to be friends any more. His initially reaction when I told him I had breast cancer was shock. I remember standing outside the federal building and his face went blank as he stared out over the parking lot taking in the news. I don't know what he was thinking but shock and racing thoughts were visible in his eyes and the expression on his face. Since that moment he has slowly slipped away. Less calls, less texts, no more visits and we haven't met outside of work in a long time. We don't go on walks or have lunch. He surprised me outside of work recently after I sent him a text "you suck" because of his slipping friendship. He waited outside, by my car, after work and said I was "really giving it to him" and he explained that he was busy with a second job, his mother and father, and the mother of his son. He apologized for not being the friend he should be, he said he cares about me a lot and thinks about me all the time and he hugged me tight. Then, back to sporadic texting and calls. Tonight, we are no longer friends. We texted back and forth and he asked if I was "okay". I am devastated but, I didn't say that. I told him it really doesn't matter how his choices make me feel. They are his decisions to make. I don't understand. If my having cancer is too much for him, then I would rather him just say it. I know it's too much for people. The outcome is so unpredictable and instead of 'friends-to-the-end' they don't want to be around in the end if it all goes badly. Facing the uncertainty of cancer's reign is too much for some to live with. I imagine he must look at me or think about me and imagine my end. It happens, to some. An unpleasant end becomes all they see. There is a chance that I will live a normal life span and be fine but, the possibility that I won't, becomes all consuming. As a result, I lost my only, true, friend on the west coast. It makes me sick inside and leaves an empty place in my heart. I will miss him.

http://www.youtube.com/attribution_link?a=tF6fqwp8W3c&u=/watch%3Fv%3D4fWyzwo1xg0%26feature%3Dem-share_video_user

Paul Simon – Sounds Of Silence Lyrics

Translation in progress. Please wait...

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence

"Fools", said I, "You do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words, like silent raindrops fell
And echoed
In the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, "The words of the prophets are written on the subway walls
And tenement halls"
And whispered in the sounds of silence

 

 

I am going to work tomorrow. I would, normally, not go the day after chemo because of the Neulasta injection but that is no more. Last round I stayed home on Friday because I wasn't sure how I would be without the Neulasta. I needed to make sure that with chemo, alone, I would be fine the following day. I feel that I am. The ill effects don't hit me until the evening of the day after and then for a few days I feel terrible.

I have a rash on my left hand. I don't know if it's from the sun - driving from work to home the sun hits that part of me and my visor doesn't cover. I need to remember to bring something to cover it. I usually wear long sleeves so I don't think to bring something. I have to remember! It could be from an insect bite, too. I leave all the doors and windows open in my room. I've had bees, monarch butterflies, dragonflies, bats and small insects share my room with me. It could be one of them. As the rash heals and peels I notice there is one spot that looks like a bite. I may never know. I saw Dr. Cohen today as Dr. Glaspy is on vacation. She was very pleasant today and it was an enjoyable visit. Maybe I judged her too harshly, before. Collette was surprised to see my hair was still with me! I still have the thinned hair on my head, hair on my arms, legs, arm pits, eyebrows, lashes and pubic hair is a patch on the pubic bone (all else is gone). She said "someone's looking out for you!". I agreed!

That's all for now. Time for lorazepam...maybe two or three tonight.

Awe Nat sat in this chair, just like this, all day :(

As Adam said, "She jacked your bed? Lol"

Mystery rash on my left writs

ME AND MY BELOVED JOE WILDHABER. MY GOD HOW I MISS YOU MY LAST, ONLY TRUE FRIEND. TAKEN AT BLAKLEYS, GREENBRIDGE, VA 1992 A FEW MONTHS BEFORE HE DIED IN A SINGLE CAR ACCIDENT COMING TO MY HOUSE. RIP.

 

Update

UPDATE OF RANDOM INFORMATION

 

I am a little overloaded on meds right now, so, I may lose my sense of cohesiveness along the way.

 

I woke up around 10:30 last night with pain in my bladder. I went to the bathroom and cried as I tried to pee. The pain was intense and bloody. I haven't had a menstrual cycle this month so I knew the blood was in my urine. This is, probably, a result of the sex Joe and I had yesterday morning before work. I'll have to ask the doctor about it. There wasn't any pain during sex and it was very nice, actually. We'll see what the experts have to say when I see someone on Wednesday with chemo. I called the Porter Ranch office this morning at 0800 and was called back at 11:30 by Dr. Michael Masterson. I have never heard of him. I looked him up online after we spoke and didn't see where he was UCLA affiliated. But he apologized for calling so late, said his pager just showed the number. But, he asked for my symptoms and gave me his cell phone number to give to the pharmacy so they could call him. He prescribed Cipro. I was barely in any shape to go to the pharmacy to pick it up but, I made it and on to target to get the other things Nat and I needed. Last night when the pain was so intense I took a pain pill (left over from surgery), a anti-nausea pill that includes a sleep agent, and a Lorazepam. I repeated this morning. I was still feeling it when we went out to CVS and Target. But, back home and all is well. Oh, the swelling in my ankles was bad yesterday/last night, but, better today. Still swelling but not as bad.

 

While at target I picked up a scale. I want to keep a better accounting of how my weight is fluctuating. I also picked up Fiji waters (it's the only water that doesn't taste like rusty pipes after chemo), ginger-ale (good for upset stomach and lackluster taste buds), a scale, Ensure (I drink, at least, one a day even when I am feeling sick and tasteless). I picked up a notebook - my current notebook is nearly full, and a accordion folder for my medical records to take to my DBQ exams coming up.

 

My chemo is this Wednesday, changed from Thursday as Dr. Glaspy won't be there. That sucks. I don't like Dr. Cohen at all. And I feel like, as a patient, I am being shucked to the side and not important enough the my doctor cares about my treatment and any problems that might occur or whatever. I don't like it. I don't like being shuffled around. I have a doctor I expect to see that doctor as we agreed. Dr. Glaspy will not be there next week or the following treatment. Bull shit. Sorry, that's how I feel. At the very least he could tell me himself and ask which doctor I would rather be with or make arrangements for me to have treatment in Westwood if he's going to be there. Shitty handling. Makes me feel like I'm just another body to stick needles in and not of any significance. Yea, just give her to anyone. With my issues of hypersensitivity and doubts, lately, this doesn't sit well with me. I'm hoping Natalia will go with me this Wednesday. No one has gone with me - although there's been lots of "I'll go with you!" , no one actually ever shows up. My faux fur electric blanket arrived yesterday! Now I have a chance at staying warm while in chemo. It's so cold in there.

 

My hair is the same. The burn on my breast has evolved a little bit and is almost gone. I was expecting it - Dr. Demanes warned me this could happen.

 

Joe, Natalia and I went to Universal Studios last Sunday. It was CROWDED. Oddly enough, I wasn't all that worried about being around globs of people from all around the world. I had my hand sanitizer and we all used it often. I didn't go on some of the rides and only panicked once when I lost track of Joe and Natalia. I had a moment of confusion. We ate at Bubba Gump after we left the park and I couldn't enjoy it. It tasted like crap and we had a major draft over our heads. Oh well. We enjoyed each other's company and that's all that matters!!

 

My skin has fared well this time without Neulasta. Scar on my forehead that has been left from it is beginning to heal a bit. It's going to take a while to heal it to a point that it won't be so noticeable but for now I see myself as Gorbachev. - or, Harry Potter.

 

Work is okay. I would like to be able to drive something that is safer than the Saturn. That would certainly ease that part of my anxiety. We'll see if that ever happens.

 

This past two weeks I have felt extremely anxious and tightly wound. It started when I was going through my old service treatment records looking for all the evidence that supports my claims. Some of the evidence relates to issues I would rather forget but I have to face it and gather my evidence and get what I deserve to, at least, compensate for what I went through on active duty.  As a result I am stressed at work and home. My time in service STILL has not been corrected and I am so sick of having to go back and remind someone to look into it. Just get it straight and get my earned leaves updated. That would help so if I am feeling sick after chemo I can take the days I need. Again, no consideration by the VA to accommodate even the slightest thing toward my situation. Way to go, VA. And, it's all documented day by day in my journal. So, I guess, since I don't get any kind of consideration from work, home, and even my freaking doctor that acknowledges and accounts for my cancer and cancer treatment, I'm tired. I want to scream from the top of a mountain "What the fuck is wrong with everybody???" Just because YOU don't want to acknowledge that cancer is in the room doesn't mean it isn't there! Show a little sense!

 

Right now I just hope my claims are settled soon and the result affords me a small apartment and the ability to finish my master's without having to go to work. I'm going to need time away from all the people and places that have overlooked my cancer. I want to be alone and recover when this is all over. I'll need time to myself to regroup and, hopefully, find it in me to forgive and restore myself to a centered and pleasant place. The friend I had that I thought would be my strongest ally and support has let me down and my heart is broken. I have been waiting for him to recover from the shock of my news and come around as he said he would. He said I mean so much to him and he cares so deeply yet, I never hear from him. I am sure I never cross his mind. That's not my idea of friendship. Especially, when on of us is going through cancer. I would rather he say that he isn't capable of being my friend during this time. I can deal with the honesty. But, don't tell me your my friend and how much you care and then crawl under a rock. It's a betrayal of the worst kind. Every where I turn I encounter people who 'care' but leave it with 'call me if you need anything'. Yea, your not off the hook and God won't see that as doing all you can for others who need you. Nor will God believe that the 'call me if you need anything' as a proper means of reaching out to someone in need. I'm curious what God plans for me or what am I being made to see with so many un-God-like people surrounding me at this time. Am I supposed to be seeing that people are selfish and liars? What can I do with that besides feeling angry and hurt? For now, it just makes me feel like, as soon as I am able, I will break free of everything I know and find that place where I should have been all along.

 

Below: the burn (left) is May 27, 2014. On the right, June 18, 2014.

The scar on my forehead from May 27, 2014 and the one on the right was taken today.

The faux fur electric blanket and the materials to spice up my plain head covering.

 









 

                                         



 











Okay...er, what??

 

EARTH TO PEOPLE

 

I'm pretty sure this is something I have done or not done. I just haven't figured out what.

 

1) Last Thursday when I had chemotherapy I was informed about my negative reaction to Neulasta was hurtful to me so, it was pulled from the treatment plan. Dr. Glaspy told me to apply for disability and call it a day.  I don't qualify for any assistance enabling me some income while I stay home. So, making my work environment safe has become a priority. I am vulnerable to sickness without Neulasta. The VA (I haven't nailed down who is responsible) will not move me to a secluded area or ask that I work from home without a note from the doctor. I'm thinking the doctor will support me with a statement - anything for the patient going through chemo, right? The email I received from Dr. Glaspy via mychart UCLA simply said "You'll be fine. Call me if you have a fever of 101 or higher". I am confused. Wasn't I taking the Neulasta to protect me while going through chemo? Didn't he say I should file for disability and he would fill out whatever they needed? Suddenly, I'm fine?? Why the hell was I going through the pain and agony of Neulasta if it wasn't necessary?? Where's my support from the doctor? I feel like I was placed on a tightrope and left there teetering for all time!

 

2) Why won't the VA just move my computer to a better place. I know people don't understand chemo but they do know that it weakens the immune system. Why wait for a doctor's note? I am going to work throughout treatment - I'm giving well over what is asked of anyone. So, why not bend for me, too?? I don't understand. Computers are moved all over the building every day. People in my department have their computers moved because of the lighting or proximity to someone they don't like. What the hell??

 

3) The car brakes incident. Please, really? What the hell?

 

Today my coach gave an hour-long training at a snails pace and then turned it over to me. Then he left! How am I supposed to go through the process while sitting with my back to the group working on a computer that is so weirdly rigged to project?? I didn't go through as much as I was supposed to but training was on hour 2 and everybody was weary! These training sessions can go on for hours with redundant questions, people challenging what your saying and personal issues being brought up in this forum. UGH!!! I panicked a little bit as I was going through the process and would draw a blank in the middle of explaining something. Nothing in there. Just blank. I lost my direction around Target this afternoon too. It's a scary feeling to be lost or to know you know something but can't find it in your brain!

 

I want to be okay going through chemo and all of the parts of treatment. I want to go through each day like it's a normal day. The reality is, it is not a normal day. I hurt from head to toe, right now. I went to work anyway. Monday and today were difficult to get through. The pain in my bones and joints was matched by a horrible pain that engulfed my mid-section from ribs to pelvic bone. Food and drink have no taste. Diarrhea abounds. Headaches, nausea. I feel like I could throw up at any given moment. The effects of chemo seem to be getting worse. Honestly, right now, I feel like I don't want to put the extra effort forth to be 'normal'. I'm not normal right now. I want to not go back to work, not talk to anyone and hibernate in the house. I'll go out in the yard when no one is here. I'll take walks early in the morning. If I'm being totally honest, I don't want to do chemo anymore, either. I want to walk away from all of it; people, work, treatment - done! I could spend my days climbing mountains and photographing wild animals, meditating by the ocean, sitting in the grass and connecting with nature - there are so many things I could do in a day that would restore me and heal me so, why am I not doing them??



Vanity

VANITY...WHO KNEW I HAD SOME?

 

 

I never thought of myself as being vain or having vanity. I wasn't one to think through an outfit or spend hours on make-up - in fact, I seldom wore make-up. As a parent, I never thought twice about throwing my hair in a pony tail, slipping on shoes and taking kids to school in pajamas. Scars, burns, swelling - whatever, I didn't reflect on my imperfections and never thought about trying to hide them. So, here I am experiencing a few of the unpleasant side effects of chemotherapy and I am distressed. I have thought about not continuing with work, not going to school events with Natalia, and not going anywhere with Joe (not like Joe and I go to many places together, anyway). I have had a challenge getting to this blog and keeping up my companion journal! What is up with that?? I have lost the vision that this is temporary and that I will return to the way I was before. Well, I feel that I am a chore to look at and without any confirmation that I am NOT a chore to look at, then, the feelings manifest. I would be fine if Joe told me that my appearance was fine by him. I know, to him, I am not attractive - I haven't been for years and years but, if he loved me wouldn't he see past the way I look? If he were compassionate, wouldn't he feel that I needed affirmation? Of course he would. But, as I am learning he, honestly, does not love. He, honestly, has no compassion and all those other feelings that come with love. So, as he would normally be, simply, disgusted he is now repulsed. I can't feel bad about it, though. I don't want to look at myself! I look old. My skin, everywhere, on my body is drying and lining. I have been vigilant with my skin for several years because of hypothyroidism and my body skin is holding up fairly well, but, the skin on my face is impacted, terribly. The taxotere is causing my face to erupt in raised, red bumps. Mostly, on my cheeks and on one half of my forehead. My skin is drying rapidly. It looks like I have a thousand lines running horizontal from my nose diagonally to my ear. My jowls seem very prominent, too. I am pale in areas where the red bumps don't appear. My lids are sagging to new depths and I am bloated. My hair has thinned to the point where the pile on the sink is more than what is on my head. I have a bald area on the crown of my scalp. Behind my ears it feels like the hair is being pulled tight in a pony tail and when I rub it the hair falls out. I am bloated around the middle and my feet/ankles are swollen like clubs. The only condition that concerns me, from a medical stand point, is the swelling. I called the oncology nurse to talk about all the symptoms but, the swelling is the only one that had me worried. The nurse told me the rash is from the taxotere and to use Benadryl cream or pill and 5% hydrocortisone if it's itching. She said the swelling was probably from salt and not the chemo because it's, just, now appearing. She advised water, no salt, and walking. I am relieved it's from salt!

I tried to tie a scarf around my head to cover the bald spot and failed. I couldn't tie it in a way that was nice looking and would stay in place. I gave up and felt a little defeated at that moment. I pulled out one of the fitted caps with light ruffle-like material all over it. It doesn't fit right because I still have some hair - it doesn't look right, anyway. I looked at hats and none look right - I look stupid. Today, I'm trying the ball cap I bought several months ago. It makes me look stupid, also. What to do? I may have to look at wigs. I have resisted that idea all along but, I may rethink. I don't know...I have to rethink a lot of things.

 

I went to work every day last week except Friday (my face and swelling plus diarrhea and headache kept me from going in). I functioned normally and my brain was running on cylinders. So, why do I feel like my coaches are disappointed with me and don't want to bother? I noticed a change in behavior toward me this week. I, really, don't need this in addition to feeling the insecurities I, already, feel. I will be working Monday and Tuesday next week, only, unless chemo is cancelled on Wednesday. Otherwise, I'll be out Wednesday through Friday and, possibly, the following Monday and Tuesday.

 

My Saturn is on it's last legs, I'm afraid. I am going to have to check into leasing something - we all know Joe won't help me get a different car; the Explorer in the garage has been there for almost a year waiting to be repaired from the fender-bender he was in last July. He told me that was my car but, I think he's taking it back. His car is leaking somewhere around the engine block and so, he may, suddenly, find the urgency to get the garaged one fixed so he can use it. I'm not surprised. That's fine.

 

It was Joe's birthday on the 17th. I had asked his sister if she would ask their brothers to go in on a Fender Stratocaster for Joe. He's wanted one for 30 years. She said it was great idea and she would do it. On his birthday I texted her and asked if she had the guitar. She said she didn't and that, while it was a good gift, it was more sentimental between me and him and that the expense coupled with other things - she's not going to get the guitar. I don't think she talked to the brothers, at all. Meanwhile, his brother asked for his guitar back. He swapped guitars with Joe a hundred years ago. Joe was puzzled by this. I was thinking, at the time, that it was a prank because they were going to surprise him with a Fender - nope, he just wants his guitar back. His sister told me there was 'no way' Joe was upset by his brother asking for his guitar back...really? That's why Joe said he was going to break it first then send it back. His sister, also, told me that I should save up the money and get him one for Christmas and that he could go afford it for himself if he wanted it as badly as I said he did. Well, I used the school stipend money from my student load and bought his Fender. Not just any Fender - the "Blackie"! Of all Fender Stratocasters that I could have bought for him this is the one he would love the most! And, he does!! I have never seen emotion in him as I saw when he opened the guitar case and saw the guitar. He was speechless and overwhelmed and truly amazed that we did this for him. He was quiet and humbled and gracious. Natalia videoed everything. She and I are touched by his response to the gift and we would give him gifts like this everyday to see his reaction again and again. He thanked us repeatedly. He said no one had ever given him anything this momentous and special - he said it is the best gift he has ever been given. I know it is. You have to know Joe to know what this guitar meant to him to be given as a gift. The day after his birthday he texted another 'thank you' and said he can't believe there's a 'strat' in the house. In spite of how he is with me most of the time, he deserves a gift like this, especially, from his family. He does for his mother, brothers and sister. He is patient and loyal and giving. He is hard working man who asks for nothing from anyone. It probably sounds like I contradict myself when it comes to Joe. It shouldn't. I love him and want to be loved by him. He doesn't love me but that doesn't mean I don't, still, love him and will do for him in a way that comes from love. If I didn't love him do you think I'd spend my stipend money for a guitar?? - And not all the money went to a guitar...I bought myself a new camera; The Samsung WB1100F Smart Camera. :)

 

Ugh...I am posting pictures of my rash and disappearing hairline. C'est la vie.

 

NOT DIGGING THIS LOOK. That's Dr. Glaspy's card taped to my phone and my nails have been cut and polish removed. So far the discoloration is just from the nail polish smothering my nails.





The lovely rash. Imagine it redder        The beautiful flowers Adam sent for Mother's Day.

This picture doesn't show the red.



This is how it falls out.

 

 

    My crowning moment.             It comes out in tangled matts. There's my pile of hair.

 

 



The "Blackie"

A Beautiful Day

EVERYTHING'S GONNA BE ALRIGHT...

 

Yesterday I was feeling, still, a little ill with food/drink running through me but, I told Natalia we would do something after school. We had talk time and shopping! I was glad to hold up as well as I did and, in fact, as the night wore on I felt better. We stopped at the Cheesecake Factory and I had salmon and she, chicken Alfredo. My sense of taste is still compromised but I could taste the tea, the sauce and Nat's banana cheesecake. When we were going back to the car it wasn't me that had to stop for aches and pains, ha ha, but Nat. She ate too much. I, secretly, was glad because she would stop so I could 'cradle' her and walk with my arm around her to the car. Happy days.

When we got home I went upstairs to see what Joe was doing; playing his guitar watching a Liam Neesan movie. He got up from his chair to hug me and say 'welcome back'. I was stunned but, of course, hugged him back! I was afraid to let go in that I may not be hugged again - or, at least, for a long while. So, I hugged until he let go. I made a conscious effort to energize every particle of my body with his energy for as long as the hug lasted. Inside, I thanked God and thanked all those that prayed for him to reveal some piece of compassion. I stayed in the room and watched some of the movie (not my genre) with a cup of tea. I took every second in and committed it to memory. He was playful for a minute and, in general, like the old Joe.

I slept on the couch - I tried to fall asleep in Joe's bed but my cough and the draft from all the windows kept me up. I made the 'tent' on the couch and took Benadryl, lorazapam, and one of the anti-nausea pills with sleep aid. I drank a cup of tea and put two logs on the fire. I woke to the alarm at 0600 and checked my condition. My throat was still red and extremely sore (otherwise, I feel just about normal!)so I texted the Pastor and apologized that I would not be able to attend the Revlon Walk for a Cure. I had already paid my registration and had my 'team Dimples' (Ethel) T-shirt. I hated to miss it. It was nice of Annie and Ethel to update me on the event and send pictures!! I will see what other walks are happening soon and attend the ones I can.

When Joe came downstairs today I was a little apprehensive...not sure if the good will of the night before was still in there. It was. He took my hand and we went outside to the back patio and he hugged me for as long as I wanted to hug. Then we sat at the table and talked about what to do for his mom on Mother's Day. She declined a visit. Joe told me his brother wants his electric guitar back. I know Joe is baffled by this - they traded guitars a long, long time ago. I know why it is, though. I asked Sharon to ask her brothers to all pitch in and get Joe the black fender Stratocaster that he has wanted for 30 years. She said she would make it happen. I wanted to give this to Joe this year for his birthday- since I am working. Well, that didn't work out but, I didn't want him to wait another year. Nat and I picked up what I could afford; a white and red baseball t-shirt (retro 3/4 length sleeves) exactly like the one he is wearing in a late 70's picture with his guitar, new jogging pants (boy, does he need them) and a pick maker. He can make his own guitar picks out of stuff around the house. I'll make a gluten free, sugar free, wheat free cake.

 

Here's to hoping it lasts because it sure feels right, right now.



Physical Pain Subsides...

FINALLY, SOME RELIEF

 

It is mid-day and I, finally, have some relief. It isn't anything I did or didn't do, but, some of my aches are lessoning. The joints and mid-bone pain is much less. My stomach is calming down and my insides aren't writhing in agony. Food is still, mostly, tasteless and runs through me. I feel a little stronger and clearer of mind.

 

 

I told Natalia I will talk to her after school. I want her completely aware of what she is doing and how Joe is manipulating her. Then, if she, truly, doesn't feel the need to care about what's happening to me then that will be that. I won't bug her about it anymore. I know that being a self-absorbed teenager will be a tough memory to live with. She'll always look back at how she dismissed me during my hour of need and she will mourn. No matter what anyone says to her to let her know that it's 'in the past' or 'she was young' she will always feel bad about it. I don't want that for her. I don't want her to need someone at sometime in her life and no one will be there - I worry about things coming around. I want her to always be loved and looked after. But, if she continues turning into Joe she is headed into a life of heartache.

 

I don't know if Joe read the letter I left him (he didn't say) but, he said "good morning, how are you feeling?" He warmed some chicken noodle soup (homemade) for me and asked if the Benadryl he bought was the right kind. On his way out he tapped my shoulder and said he'd see me tomorrow. I am grateful. He may not do this again for a long time - if ever, but, for right now I am grateful.

 

I see Dr. Glaspy at 1630 and we'll see about work. I have to ask him why I'm bleeding so heavily right now and my breasts are in pain - a full-blown menstrual cycle on steroids. I'll ask him about vitamins, too. 

 

Jorge dropped a few dollars on the card...I am so thankful to him!!

 

I am thankful to my church family. Without their support and compassion I would be alone with God. I would rather share the word and love of God. He is alive and working between us and with us and for us. I feel him more evidently when He is part of a discussion. Jesus I feel in my darkest, loneliest moments and within the deepest shadows. Sprits surround me and are easily found when I need. I know, in that sense, I am never alone - But God did not intend such an existence. He is within all of us and intended that we compliment and fulfill one another while we are earthbound. To love one another, and ourselves, for the spirit we possess - Godlike.



Dumbfounded and alone

REALLY, I AM ALONE??

 

I went to work Monday and Tuesday. It was extremely difficult to be 'there'. I was aching all over, sick to my stomach and not of a clear mind. My aches and hurts were not like anything I've ever felt. Tylenol doesn't work and the sharp jabs of pain are in the deepest parts of my bones. My joints will hurt randomly and stop me in my tracks. The aches throughout my mid-section are indescribable.

 

It isn't a stomach ache or intestinal virus or any thing else relatable. It is a discomfort I can't explain. Each organ reacting to the chemo, I guess, and stretching, trying to breath. Nothing can fix it. Antacid, Pepto-Bismol, Alka-Seltzer - or any of the 'go-to' remedies can't be gone to. Just hold on and pray.

 

It would be most helpful if I had help at home, though. Someone who knew what meds I should take and asked how I was feeling once in a while. I would love to come downstairs and see someone making little bite-size samples of food for me to try - just to see if anything had taste and I could tolerate it. How joyful it would be if someone ran a hot bath and said "this might help". Better, still, someone would come into my room and see if I was okay. If I hadn't gone into Natalia's room on Sunday and asked her to check in on me once in a while, I would have gone the entire weekend without seeing anyone. Joe stayed downstairs watching TV. I had to ask him to get something from the store and he came back with the wrong thing. I asked him for the tub stopper and he said there wasn't one. He went and picked one up. Then he went back to the TV. I couldn't bathe in the big tub because the jets were full of junk and needed cleaned out...I tried but ran out of strength. I rested about an hour and went into the other bathroom and cleaned out the smaller tub and was able to soak a little bit. It was difficult getting out by myself, though, and I won't do that again.

 

Sunday night I cried on the edge of my bed. I don't understand how someone lives in the house with their partner of 8 years, who has cancer, and is ignored. How is that possible? Joe doesn't come up to me and hug me for no reason and say "I love you" or "we'll get through this" or "you'll be okay" or "don't worry about anything" or "if you can't work, its okay". How about a gesture of some kind? Ask me if I'd like to go for a ride. Is there anything from the store you need? Why not pick up a magazine or a book I've been wanting to read? I could use some time on the couch watching a movie with his arm around me, maybe smoothing my hair and holding my  hand. Nothing. He walks by me and says nothing. He is okay that I drive my 20 year old Saturn to LA while the newer explorer sits totaled in the garage - yes, the one he totaled and now tells me I can have. What makes him this way? I know people who take care of their loved ones; husbands, wives, friends, family, children. I know how I took care of my mom. I took over her medicine to make sure she took them on time - one less thing she had to worry about. I tried foods that would appeal to her - whatever foods she wanted to try. We rode along the waterfront and to the beach. We took her to the mall if she wanted to go. If we could have done more, we would have. There is something in us that takes care of another instinctively. No one wants to see their loved one sick or suffer but you know that the compassion and comfort you give means more than medicine. So, what makes a person turn against you and treat  you like an unwanted animal when you need them most?

 

I wrote Joe a letter and asked him those questions. My final question was "I need you to love me completely - what do I do to make that happen?" I'm sure, of all the letter, he will zero in on the last few words and have a list of things for me to do (cook, clean, exercise, don't be so serious, laugh more, etc., etc.) - knowing this, I added "remember, I have cancer".  With that, I'm sure he won't acknowledge having read the letter, at all.

 

I never would have imagined Joe turning out to be like this. He had his faults and could be passive-aggressive and mean but, I never imagined he would be like this. He has broken my heart a thousand times and again a thousand more.

 

I am afraid Natalia is learning from him. He takes her shopping and has been splurging on her all while doing nothing for me except make my situation more difficult. She doesn't stop him and say "you can't do this for mom then you shouldn't be doing this for me". She, in turn, does nothing for me either. She doesn't come home from school and stop her rambling to ask how I am. She is resistant to do anything I ask her to. She has helped me very little and sporadically. The more comfortable she is around Joe's behavior the more she is becoming like it. She must feel that if it's okay for him to ignore me then it's okay for her, too. I give her more of a pass but not much. Natalia and I have been closer than two peas in a pod and I am her strongest ally and supporter. No one loves her like I do. So, why doesn't she care if I am okay or not? It's easy for her to walk by my room and not look in. It's easy for her to roll her eyes when I say 'I'm not feeling well enough to go out to eat'. How is this possible? I guess it would be best if I had a hole to crawl into until this passed. Then I won't have to worry how I burden others and I won't have to be hurt by lack of compassion.

 

I know if I were on the east coast near my family things would be different and I would be cared for and about. If Natalia were there with me she wouldn't be acting like this either. She would have others there to look to and she would learn how to be in this situation.

 

I talked to my Uncle Ron Stegall in Maine and my Uncle David Kanke in MA. I'm glad I did. I got something different from each and I hope to keep them close from now on. They are the closest thing to my parents alive. When I talk to Ron I think of mom, when I talk to Dave I think of Dad. And, it's nice that they talk about my parents, too! Very comforting. I would like to have these phone calls in person, though, with everyone. What a difference a face makes.

William Blake