Is The Pain Worse Than Last Time?

IS IT WORSE? OR IS IT ME?

 

It's Monday...I called off work and I am in pain! Chemo was Wednesday and I went to work on Thursday and felt, mostly, well. I started feeling aches by the end of the day, but, nothing remarkable. I had to leave work early on Friday. I asked to start a training program on Fridays and this was the first installment. I had to stay, at least, until after training. By Friday training time (10:00 a.m.), I was feeling the, now, familiar arrest of my bones; ankles, knees, ear canals, wrists, shins, etc. Friday, it was a pulsating pain - here and gone, there and gone. Then, like a thin ribbon, the pain wraps around the shin and compresses. Imagine the ribbon is on fire. It isn't pushing flesh or muscle against the shin but, only, around the shin. That's how it goes for all the bones. It hurts. When all bones are hurting, simultaneously, like this past weekend, it is, almost, unbearable. There is no comfortable place to sit, stand, lay...it hurts to lay my leg on the recliner, blanket, pillow, etc. It is the same for my entire body. It hurts when two limbs touch. To add to the misery, the mid-section discomfort. Like something is inside my organs pushing to get out. Nothing tastes like I remember it. My mouth has a heavy taste - something like having chewed on plant roots. It effects everything. Water and food are no longer what I remember them to taste like. Everything tastes horrible or like nothing. I am avoiding the foods that I, really, enjoy in my pre-chemo days. If I try to eat something that I like, the new, rotten flavor ruins the food forever. My stomach, still, turns thinking of the corn on the cob I ate a few months ago. I drank milk yesterday. I had a craving for milk and I couldn't get enough. Glass after glass. The taste wasn't very strong nor altered. Maybe it was the texture and temperature that went down easily. I tried scrambled eggs. Not appealing. I ate a few bites out of necessity. Tea is the only thing that goes down without a problem. Black tea with Stevia. That's it. I am weaker this time than the times before. My last chemo treatment was overshadowed by the kidneys, vomiting incident. That's all I remember was the pain and terror of the non-stop vomiting. That took a few days to recover from and when I did, I considered myself fine. I guess because it was such a terrible place to have been that to be feeling better was like obtaining super powers. My loss of strength is a little surprising, to me. I was warned it would happen, eventually. It's hard to climb the steps, get up from a chair, pour a glass of milk, open a water bottle, or hold a glass to my mouth. Natalia had to help me, yesterday. I shake, uncontrollably, holding a drink to my mouth. The pain is of such intensity, at times, that I can't take a full breath. Short, shallow, quick breaths is all the pain will allow. Now add hot flashes. The chemo has, officially, pushed me into menopause. The 'hot flashes' are worse than anyone has explained. The sudden rise in temperature, as often as, every few minutes is beyond uncomfortable. I may be reacting strongly because it is happening with everything else. I can't, just, deal with the hot flashes. I deal with all of the horrible effects of chemo, together. I know that I will feel better in a few days. Well enough to go to work and do homework. I have a final paper due today. I haven't been able to think straight. It is difficult to read or comprehend, at this time. It is a little better today than yesterday. I read my final assignment instructions and can understand them. Yesterday I could not. Now, I need to organize my research and try to put a paper together. I'm glad I pulled all of the research I would need before the chemo. I knew what I would need because of a separate homework assignment I was working on. I should have read the final instructions, then. Living and learning as I go.

 

Joe returns today from Arizona. He has plenty to do when he returns. The sprinkler system needs fixed and the A/C, still, needs fixed downstairs. The upstairs works the way he has it configured but, he has to fix it so it isn't bandaged. He'll be leaving for Georgia around the time I have my  next round of chemo. He'll be gone for 5 weeks.

 

I want this to all be over. My super positivity is settling into something like, just get me through it and get it done.



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!!!



THE UP-CHUG OF THE ROLLERCOASTER

WHEN THE JOURNEY CLIMBS UPWARD

 

 

 

It's Sunday. I didn't go to church even though I was awake and moving. Am I moving away from religion? No. My relationship with God is fine. Mine is a quiet one and nothing will change that. I'll never be the one that shouts around the house or yells in the sanctuary. That is someone else's relationship. If, ever, there comes a time when God moves me in that direction, then, I shall go. For now, it is the way it is. I will, still, attend church. I, still, value the church family. Right now, I feel, the anxiety of having to be somewhere throughout every day; work, home, doctors, school, family...my relationship with God is with me everywhere and the building will be there next Sunday, too.

 

 

This past Thursday Natalia went with me to have the CT scan for my kidneys and bladder (as of today, no results). She was disappointed when she realized we were going to the facility close to home and not Porter Ranch or Westwood. We were sitting side-by-side in the waiting room and she texted that she didn't like it there; everyone was sad and sick. It told me a lot about how she is dealing/not dealing with what I am going through. I'm sure my situation affects how she sees sick and sad people. When I was done she asked if we were going to do anything since the day was young. She told me I wasn't the spontaneous person I once was. I really don't know what she's talking about. I have tried to do everything she wants to do unless I am, really, debilitated. Whether I am sick, tired and in pain I have done whatever she wants to do just because I don't want her to feel the brunt of my treatment. I guess she is thinking more about what cancer and treatment represents on the whole. She just didn't articulate it that way. In a side-note; Natalia cried when she watched the video of me and Joe Wildhaber that I posted with one of my blogs, recently. She said it made her sad because I looked so happy. I am, still, happy, but, she sees my situation and feels it must affect my happiness. She added, "you look model pretty, by the way". I guess I did. Cancer and treatment changes things. Whether it's obvious or not. Whether we go to the mall or not. The cancer and treatment comes with us. It shrouds us, always. The not-knowing and the uncertainty of the future. It's as if whatever we are doing it may be our last time. I know that I feel an experience differently. I take snapshots of everything, in my mind, and freeze it for a second. I notice that I am, slightly, bolder in areas as well such as, work. When I returned to work on Friday nothing was said about my request to be moved (again, this has been back and forth for months) to a more isolated, ventilated area of the building. Wednesday I submitted my doctor's note that outlined the reasons why I needed to be moved. I talked to my coach and handed him the note. He said he would take it to Deedra and see if they could do something. We've had this talk so many times. I have been turned down for every request that I have made in regards to my health. Rejected for advanced sick leave, rejected work from home and no attempts to move my workstation out of the enclosed, airtight, vent deprived sweat shop. I had enough. I went to the union reps office and talked to him. I have talked to him on the phone and at work and wanted to make time to join and find out my options. I have been wanting to do that since finding out I had cancer. I had a feeling the VA management would not consider me as I travelled this road. I didn't realize just how much I would be ignored, patronized and lied to. The pressure to produce numbers can drive people to do things they wouldn't want done to them. That's the reason my requests went unanswered or rejected. If I were an employee that did the minimum and never excelled at anything I'm sure I would have been accommodated. By noon on Friday, I had an isolated office on an empty floor with my computer installed. I spent the rest of Friday working, happily. The fear of contracting illness greatly reduced! Thank you, union!

 

Natalia and I went (spontaneously) to Universal Studios after my CT scan. I had a great time. I was, still, nauseous, but I didn't let it stop me. I was in an exceptional mood. I laughed at everything and Natalia and I made each other laugh all day. 2-hour lines? No problem! I was the most even-tempered and good natured I have been in a long, long time. The night before I dreamt about my beloved Joe Wildhaber; we walked around a small town and enjoyed our time together. That may have something to do with my buoyant mood. Natalia and I started our day at Universal in the Horror walk-through. I, usually, go through it and nothing scares me or affects me. Not this time! I screamed at everything. It was so much more fun being scared! We laughed and screamed our heads off to the end. We had lunch at the Purple Panda (Natalia's name for Panda Express) and shared a table with two Asian women in their late 40's. When they opened the fortune cookie they gave it to Natalia and asked what it was using gestures. We tried to use gestures to tell her it was a good fortune but, we were unsuccessful. After several minutes Natalia used her phone to look up a translator program and we asked if they spoke Japanese or Chinese so she could set the translator - they were baffled. Nothing we said computed. One of the women pulled out an iPad with a translator but, we couldn't figure it out because it was set to translate from their language to English. They got up to leave, shrugged, smiled and said 'bye'. As they were walking out Nat's translator started working. I grabbed her phone and rushed to the door and tapped on of them on the shoulder. When the translator showed our message in Taiwanese they said "no, no, no, made in China". Then, one pulled out a cardboard back of a small notebook and on it was written "made in China". So, I switched languages and was able to tell them that the fortune in their fortune cookie was good. :) My fortune was good, too. I am uploading a picture here.

 

I received a phone call from my friend that said he couldn't be my friend (I blogged about that some days ago) yesterday. He had to go quickly after we began to talk but, it was a pleasant surprise to hear from him. Go figure.

 

Joe's mother and sister came up from San Diego/Riverside yesterday. It was a very pleasant visit and I am so very grateful they made it. I enjoyed the time with Ginger (Joe's mom), especially. We went to eat at Dink's (my favorite place for fish) and I'm glad everyone enjoyed it a much as I do. Ginger and I sat on the patio near the koi ponds and listened to a two-man band playing hits from the 80s and 90s. The singer/guitar player was my age, if not older, and was, quite, good! Natalia, Joe and Sharon went inside the mall so Natalia could exchange her bathing suit at Forever 21. I enjoyed this time with Ginger very much! When we returned home it was time for them to leave. I look forward to their next visit.

 

Joe returned home from Tucson yesterday morning and will be going back this Tuesday until the plane is ready to return. We had a wonderful night after everyone was gone and Nat was asleep. We stood, naked, on the balcony (I was naked - who cares?!) and he was in boxers. We talked about things we planned years ago before I moved out here from North Carolina. The stars twinkled and traffic noises were muffled in the distance. The 5 was alight with cars going and coming and a cool breeze blew across our bodies. When it was time to call it a day, Joe came into my room and spent the night. The air conditioning was running and the TV was on. He slept in there anyway. And, I am grateful.

 

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https://www.youtube.com/watch?v=880QO9m4hGw&feature=youtube_gdata_player

 

Joe with his sister's dog, Jordie

The office I, finally, acquired at work

The fortune in my cookie

Me and Natalia on Jurassic Park at Universal studios

French Street, Universal Studios



The Awesome House of Horrors! Nat was SCARED!! Zoom in on the little girl's face - poor thing.

Beetlejuice at Universal Studios

 



You know that little cloud with rain drops over your head....

"IT'S JUST BAD LUCK!"

 

That's the word, so far, after seeing Dr. Sender, urologist. I called the Porter Ranch clinic and made an appointment to see Dr. Cohen today; my urine was still as red as a stop sign. Once in the office I started cramping. Diarrhea! Really?, I asked myself. I grabbed a specimen cup and filled what I could. Dr. Cohen was so sweet. She apologized for the situation and told me that, in spite of everything, I still looked good - just pale and tired. We discussed the weekend and how I was feeling. She told me she was of the opinion that it was kidney stones. I told her of my past experiences with stones and other urinary system issues. She arranged for me to see a urologist in Newhall, by the Henry Mayo Hospital (so I would be close to home) and set me up in a chair to receive hydration and anti-nausea. My blood work came back good with the white blood cells 'low' but, that is to be expected since this is the time, after chemo, that they are at their lowest. Nothing else alarming in the results. About 2 hours later I was ready to go to Newhall and see the urologist. Joe brought the explorer to Porter Ranch and picked up the Saturn. His day was filled with a funeral and memorial service for the father of former shipmate. He returned just in time to trade cars with me.

 

I waited to see Dr. Sender for a couple of hours but it was worth the wait. His office is nondescript and, sort of, shabby, really. He seemed a bit disheveled in a handsome way and had a very approachable demeanor. Of course, none of that matter if he turns out to be a quack. Thankfully, he wasn't. We talked about my health history, surgeries, chemo and my current issue. He took me to a room and performed an ultrasound on both kidneys and my bladder. The right kidney has a 9.2 mm calcium stone and 3 other smaller objects (probably stones, as well). The left kidney has a 3 mm cyst in it. There is no swelling or indication that there was a uric acid stone present or had passed. If there were, that would indicate it was chemo related/created. Dr. Sender explained the breakdown of cells during chemo and how this can become the uric acid stone. Luckily, that's not happening. Dr. Sender said, "It's just bad luck!" With my history of stones, etc. now's as good a time as any to have this happen. Then, he made the comment "ya know that little cloud that follows you around above your head..." and I replied "Yes!" It's been like that the whole time! He made me chuckle a couple of times and put his hand on my shoulder when we were exiting and shared some words of encouragement. Tomorrow I will call Tower Imaging and make an appointment for a CT Scan for Dr. Sender. Then, we'll know, for sure, what is going on in the kidneys and bladder.

 

By the time I got home I was so weak and shaking. Not much to drink and nothing to eat all day. And, I was still nauseous. I made chicken noodle soup and plopped on the couch.

 

I can't explain the drop in blood pressure today, though. It was 121/80 in Porter Ranch and at Dr. Sender's, 115/77. Usually, it's 149/88 or something similar.

 

I'm not going in to work tomorrow. I don't feel horrible about it, either!



My urine around noon today as I collected a sample at Porter Ranch

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!!



Simon & Garfunkel - The Sounds of Silence (Audio)

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.