ANOTHER DAY

NOT SURE I LIKE UNCERTAINTY

 

I learned, pretty quickly, that during the course of my journey with fighting cancer that each day would have to be lived for what it brings. I would not be able to predict how a day would begin or end. I would live minute to minute most days. It's been 6 months and it is, still, that way. When my mind wanders to a week from now or a month from now or a year from now, something slaps those thoughts away and brings me back to this moment. I'm beginning to feel a bit of...resentment? I'm not sure that's the right word. I'm used to a long range plan. The far-future plans have kept me sane during times of poverty and homelessness with 2 young children. If I didn't think about the possibilities a brighter tomorrow -of, a way to get out of the situation I was in, I may have collapsed under the weight of despair. So, I feel a little nervousness and unhappiness being 'stuck' in today. It doesn't feel liberating or freeing, at all. I guess it feels the way it does because my here-and-now is in need of improving and changing. But, I can't plan for it. I can't develop a way out. I find that I am more willing to do things spontaneously and, even, knowing the doctors may not think it a good idea.

 

Yesterday, Nat and I went back to Los Angeles Equestrian Center and went on a trail ride. I signed us up for 2 hours but, quickly, changed my mind once we started moving on the horses. I had 'Starsky' and Nat had 'Rose'. Starsky was a little frisky and I freaked. The last horse I was on tossed me off his back like a dirty rag. My trail guide was a little cantankerous with me because I was not wanting to let my horse get frisky and trot! I explained that I didn't have enough strength in my legs right now to let him trot. He said "looks like you got muscles in your legs from where I'm sittin'". I flipped! He asked if there was something preventing me from using my leg muscles and I told him I didn't have any! I explained where I was in the chemo process and my muscle mass has been depleted along with 30 pounds of weight. He was trying to challenge me with words like "well, you want to learn how to handle things like that when the horse does it, right?" and "When you have to you will be able to use those leg muscles" and "stop holding his reigns so tight!". Whatever! But, by the time we were nearing our end of one hour, I was doing better and no so worried. I let Starsky pass Rose and if he wanted to trot, I was willing to let him. We'll go back over the weekend. I will be wearing boots and my knee sleeves! I asked the trail guide if horses could sense fear and he chuckles and said they could sense all emotions and that it is cathartic (my word not his) for the rider because every time they get on the horse if forces them to check their emotions. I like that. It's better than therapy. 

 

My visit with Dr. Sender was uneventful today. Thankfully uneventful!! We couldn't do the cystoscopy because of Neutropenia. But, the doctor doesn't feel I'll need more than 5 days of antibiotic and I'll go back in on Tuesday to leave a urine sample. CT scan showed stones but nothing else to worry about.

 

I was called by Porter Ranch to come in on Thursday and see Dr. Glaspy. He wants to see me for a follow-up and discuss next weeks chemo. I'm surprised. I figured he wasn't interested. Dr. Cohen's been taking care of everything. Whatever to that, too.

 

Overall, I'm tired. Feeling a little edgier than I have in the past weeks. Sleepless. Anxious. Wanting to say "Fuck you" to work for multiple reasons - not all are directly related to the VA.

 

Mine and Joe's lovely stage is slipping again. I hope it doesn't slip too much.

 



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!!!



Surprise, surprise...

I'm Blaming the Wrong Culprit!

 

 

I was under the impression that the Neulasta was causing all the pain in my bones after chemotherapy and that the Taxotere and Carboplatin were causing the brain fog/confusion, loss of appetite/taste. I was wrong - I'm getting used to being wrong when it comes to what's happening to my body. I didn't get the Neulasta last Friday. I wasn't happy about it because it leaves me vulnerable to bacteria and fungus infections but, I saw the 'silver cloud' - no excruciating bone pain! Well, right now, I am in terrible pain. I have been since late Saturday. The bone pain is from the Carboplatin. My confusion/brain fog, evidently, was motivated by the Neulasta. So far, no rash or red bumps. But, another week will tell us for sure.

 

I spent the entire weekend dealing with an anxiety that stemmed from not getting the Neulasta and subsequently being denied for SSI and Social Security Disability (yes, strange system) which means my options for staying home vs. going to work are cut in half. I struggled with feeling unimportant; Joe never got the brakes fixed before he left town again. I don't have his car to use while he is away. The car would be one, small relief. The drive to work, through LA traffic, is stressful. I drive a car that is 20 years old and doesn't feel safe; constant drain on the oil, knocking and pinging from the engine, chortling and stalling, clutch slippage and, nearly, bald tires. Everything in the Saturn is broken!! It smells like an old car when you turn on the air. The lining on the roof is barely there. I am emotionally attached to the Saturn for many reasons but, I don't feel safe. Joe knows what's going on with the car and doesn't offer to let me use his new Explorer or to get the almost new Explorer in the garage fixed. Any other time (other then now) I would be okay with his decision to not help me. I would work overtime to get that car fixed. Right now the car issue is killing me just because it tells me how much Joe doesn't think about how he could help me get through this. He only knows there is no 'I' in team and he doesn't like that. He only wants the 'I'. I have never met anyone that won't put a moment's thought into another person. I prayed a lot this weekend to clear my heart of those resentful and wounded feelings. I prayed that God would give me peace about my situation at work. Whether my health allows me to stay or to not stay, I prayed that I would be at peace. I went to work with that peace. I can't say I will feel that peace tomorrow or the next day but, for today, it was there.

 

I sent an email to Libby at Dr. Glaspy's office so she could ensure the doctor got the word that I needed a statement from him so my desk can be moved to a better work environment or to let me work at home. I didn't hear anything back from the doctor today. I gave him the fax number and email address at work. Hopefully, tomorrow. I am extremely nervous about working in IPC, now. All day Scott was opening one of the exit doors to get ventilation and someone kept closing them (from the offices on the other side). Fans were blowing, people coughing. Ugggghhhh.

 

I read an email that we had a politician (Brown) that visited the VA Federal Building last Thursday. Our VSO manager, Emmett, said in the email that the rep was 'pleased'. I fired off an email to Emmett and asked what the visitor thought of IPC. Emmett responded that the visitor didn't visit all the spaces but he heard about IPC and was 'pleased'. HAHAHA. Of course, he doesn't visit IPC!!! No visitors come to IPC and talk to us or look at our work space! It's hideous that we are forced to work in a sweat shop like this.

 

Yesterday was Father's Day. So sad. I miss my father. It would be so different if he were alive today and in good health. I would never be afraid. I would never feel anxiety. He would hold me while I cried. He would listen to my thoughts. He would cry for me and love me. He would not let anyone affect me negatively during this time and he would not let me worry about bills. Most of all, he would check on me. He would ask me how I'm doing; in the bathroom, sleeping, sitting for too long and he would ask me if I was okay. He would watch TV with me. He would talk about what's going on in the world and he would listen to my point of view. His comfort would be infinite.

 



Me and my Dad, Elmer S. Dingley. August 1979. Pittsburgh, PA

And the hits just keep on comin'

A GLITCH IN THE TREATMENT PLAN

 

 

I arrived at my appointment for chemotherapy in Porter Ranch at 0938 (I was a little late). I went through the regular questionnaire and, of course, noted my rash. When I was in the chair the questions about the rash came up and I told the nurses that it was the same rash on my face as after the first treatment but, it was worse. I showed them the picture, from my cell phone, I have posted here. All were aghast! Collette asked what I was told by Dr. Palmer when I came in during the first bout and what did I use on it. I told her that Dr. Palmer wasn't overly concerned (it had faded by then and was only my forehead that was red and ugly). My concern, at the time, was shingles. It was confirmed that it is not shingles, thankfully! I had tried everything over the counter I could think of and a few suggestions; Benadryl tablets, Benadryl cream, Neosporin, Desitin, Vaseline, Caladryl and hydrocortisone.  But, today the nurse ran and got Dr. Glaspy and I showed him the picture and  he was not happy. He thanked me for taking the picture and told us it was not from the Taxotere but from the Neulasta. It's called Sweet Syndrome and he cited a 1988 medical journal (this is when it was first written about). Dr. Glaspy said there would be no more Neulasta for me. I was immediately concerned about pulling the injection that helps me fight the dangerous bacterial and fungal infections I am susceptible to without it. Dr. Glaspy said it could cause permanent scarring and each time it comes back it is worse. He told the nurses to go on the web and pull up images. It is scary! I balked a bit, anyway, and told him I am okay with the scarring if the treatment outweighs. He said it didn't. He told me he took an oath to not hurt his patients and this condition is definitely hurting me. He told me to apply for SSI and he will fill out the necessary related paperwork. My work conditions are horrible and this is why I went along with the neulasta in the first place. There is no way I can work in this environment and not get sick. If I get sick and run a fever I have to go to Dr. Glaspy immediately and get a blood test done. If my white blood count is low I will be hospitalized and given intravenous antibiotics. A friend at work had sent me a picture of my work environment to show the doctor at my initial visit but I can't find it now, I think I deleted it. But, imagine a conference room filled with picnic tables end to end in rows of 5 with each row having 8 picnic tables shoved together. Each table has a computer and stackable paper trays plus whatever we need to do our job; stapler, organizer, etc. So, everyone is crammed together, the windows don't open and the air circulation is terrible. Just recently the air conditioning vent was reconnected so we could have some air - but, it doesn't start running until a couple of hours after I get there at 0600. We have a few people in there that are chronically sick. One to my right and one behind me. With the sneezing and coughing and fans blowing there is no way I will be able to not get sick. I requested to work from home long ago and nothing has come of it. I sent my coach a text after my chemotherapy and explained the situation and, now, its imperative that I work from home. If we had the ball rolling my home visit would be done and all the things I need to get started would be here. But, nothing has been done. If approved, it will take weeks to get me underway. So, I have to apply for SSI. I went and did the online application for social security. Now,  I have to call and make an appointment for SSI. I would rather work from home than collect SSI or Social Security. But, the VA may not make that happen. All the work is virtual now that centralized mail is in full swing. I can do everything from a remote site - my home!! But, if not, I will stay home and work on my Master's classes. I really need to spend more time on this, anyway. It's important to me to do well and pursue this line of employment. I, do, feel terrible about causing problems at work. I know my coach and my co-workers are depending on me. I really love what I do and I do everything with a conscious effort to help the veteran. I pass my work ethic on to others that I train and to those that aren't, quite, doing that. Some have been there so long, and have no military experience, that they treat it like a job - just paperwork. That "chaps my hide" as Scott would say. We'll see.

 

As far as what this means for me in regards to symptoms after chemo, we will see. I imagine I won't be in as much pain over the next three days and I won't get a face rash.

 

I still have the same amount of thinned hair. I didn't lose any more after the last round. But, Dr. Glaspy said it would all come out, just slower with me for some reason. I said, no, it won't and he chuckled and asked if I wanted to make a bet. No, I don't. LOL.

 

Next time I go for chemo I won't have to have a much in my premeds. I hate the Benadryl drip. It puts me to sleep and I always wake up startled. I hope I am not yelling out like I do at home during my nightmares - or, gasping for air.

 

I really need a hug :(. Joe is here - been here since last Saturday but we haven't seen much of him. He's at work all hours of the day. He has been trying to get the air conditioners working and fix the brakes on his car so I can use it. He's gone around the clock and didn't, even, have time to bring me my jacket while I was in chemo. He leaves, again, tomorrow morning. We bought him some Ralph Lauren cologne for Father's Day. He likes it. We aim to please.

 

Still navigating my claim with the VA. It's been in for almost a year and bounced around from LA to Oakland, to South Carolina, to LA, to Oakland and has had nothing done with it. Not even looked at. I added contentions (including breast cancer) and uploaded a bunch of evidence. I'll add more. Make it as easy as possible for the VSR and the RVSR to do his/her job. All the evidence is, already, in their laps, but, I sent medical documents anyway with post it notes. NOW JUST LOOK AT IT, ALREADY. How timely that I have wait issues with VA; my claim, my situation with the mammogram, and the Congressional hearings are in full swing. I reported my health care debacle to the Chairman's office in Florida and followed up with evidence. I told others about the link and I hope they follow up, too. If no one knows there is a problem it can't get fixed.

 

I'm done for now....



Sweet Syndrome
 

And just for fun...Natalia keeps it me on the better side of everything - just another day like any other day :)  :

 



https://fbcdn-video-a.akamaihd.net/hvideo-ak-xpf1/v/t42.1790-2/10444177_797568113587852_1263002727_n.mp4?oh=09077a99b2a2cb88c1a55ce56c64b56c&oe=539AAB42&__gda__=1402645765_e622f6f4cdbbac5198aaf4b6cd259d9e