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

 

 

Out of the 'wallpaper'

FEELINGS ARE SETTLING IN

 

I don't feel as identified with the character from "The Yellow Wallpaper" these days. That's a good thing. But just in case, I won't be putting up patterned wallpaper any time soon. I can be emotional and cry easily but, I'm not desperate for compassion. Things are settling into a 'normal' of sorts. Like anything we have to live with for longer than a few months, it settles in and becomes a part of our expected day.

 

Joe is out of town with the plane. I'm not sure when he's coming back. I was told this weekend but, it may be next weekend. It's okay. I'm not feeling afraid or vulnerable because he's gone. I'm okay. He texted me earlier to ask if he should go to a school in July. It will take him out of town for 5 weeks. I'm okay with that, too. His life has to go on as it is. I'm glad he isn't around much, really. The less he has to look at me the better. I asked him not to, in fact. He said something in a text that was very sweet. When I told him to go to the school, the more time away the better so he doesn't have to look at my condition he replied, "It's about inner beauty". He didn't tell me I was beautiful on the inside but, I understand what he's saying. I know how difficult it is for him to see the inner beauty beyond the outer beauty. Like his mother said, 'Joe like beautiful things; clothes, cars and women'. I see his comment as something deeper coming from him than I have seen in the past. Just as I am letting myself love him as I did 8 years ago, without fear of rejection, maybe, he's letting himself feel without fear of rejection. I'm comfortable with the place our relationship has taken. It will change and evolve as time passes and I believe it hinges on my words and actions more than Joe's. If that is true, our relationship will only become stronger as time passes. But, if he isn't here, physically, for me to love. then. what will happen? Will I feel rejected and shut down my emotions? That's what I would do a few months ago. I can't afford to shut anything down anymore.

 

I, actually, was propositioned, today, at work! I am stunned. What is that about? Out of the blue by someone 20 years younger who I considered a quasi friend. I would never have considered him as anything other than a work mate - even if I were 20 years younger he would not be someone I would be attracted to. He's a pleasant person but we have never had a conversation beyond general, short, 'how's everything'. What would bring this on? I'm disturbed by this. I am broken, physically, and we never had any kind of deep conversation. We don't work on the same floor and rarely see one another. I am so confused.

 

My face is healing, finally. I still have redness and a few bumps but not covering as much of the surface. It isn't painful, today. It looks like my forehead may, actually, be healing more, too. The red area on  my right breast is peeling. I was told this might happen. The radiation treatment can cause this. It's an area the size of the cavity left after surgery. I keep it covered in Vaseline as often as I can throughout the day and night. The incision from the SAVI is healing, as well. The last remnants of the scab have fallen off.

 

I, continue, to run up the stairs whenever I go up. I've been on the elliptical once. I need to get on there more. I feel well enough most of the time that I can do more exercise. There is, approximately, 5 days after chemo that I, really, can't do any physical activity. Beyond that, it's, sometimes, minute to minute for a few days followed by mostly good days. The week before chemo I begin to feel like my old self (minus taste buds).

 

I have the same amount of hair that I had at my second chemo treatment. I have my third round on Thursday - 6 days away. We'll see if my hair falls out before then.

 

I'm not any more tired than I was before chemo treatment. Today, I was a little more tired than yesterday but, not any more than I ever was. I am told (Dr. Palmer) that the fatigue will increase as I have more treatments. I am going to do my best to not let that happen. I may have no control, we'll see.

 

Joe sent this to me today. He took this the day we went to see Dr.McCann
in Torrance. This was Palos Verde. We were standing on the edge of a little
baseball field overlooking the Pacific Ocean.

This is the 'burn' like mark on my right breast
right over the area where the SAVI was placed
during radiation. It has, since, peeled. The incision
around the nipple is barely noticeable, now. The small
incision for the SAVI is healing (it's on the right around
5:00 from the red mark).
 



Self discovery...can be painful.

THE ROCKY ROAD TO SELF EVALUATION

 

 

I missed two days of work this week; not because of pain or nausea, but, a rash on my face. The same rash that was on my forehead (still hasn't healed completely) and on my cheeks after the first round of chemo. But, this time, my cheeks became covered in raised red bumps that filled with pus and bled. My forehead became agitated, as well. The swelling and bleeding is painful but, most of all, I, really, look horrible. My hair is, still, thin but hanging on. I look like an 84 year-old man. So, here is where self evaluation/discovery enters the picture. I never thought of myself as vain, but, find that my appearance bothers me. I assume it bothers others, too. As if I was a raving beauty before cancer. I wasn't - I know that. But, appearance plays a role in how one is treated by others...I know that very well. When I was homeless/living in poverty I couldn't afford clothes and, therefore, the boys and I shopped at Goodwill. I wasn't dressed "to impress", ever. If given a choice, the man at the sales counter would wait on the well-dressed woman in heels before me. I'm not feeling sorry for myself - that was long time ago. It's an observation. So, here I am, with a compromised face and head. I'm still me but I am viewed differently - or am I? I started thinking about the kind of person I am because one of my VSO friends, Duke, sent me a text today that said "don't worry, you are a beautiful person!". So, I asked myself, am I a beautiful person? I know that before the cancer diagnosis I was angry, bitter, and resentful toward Joe and I am working on that every day. How am with other people? I have a natural tendency to be kind to everyone and to reach out to those that others might not. I don't hold grudges and I don't judge. But, and here's the big BUT, I let others influence that part of me. I will laugh along or say something snarky if it fits the conversation. I'm not comfortable with that part of me and I think it makes my appearance ugly - at least, to me. Why do I do it? I, honestly, don't think about people around me and what they are doing. It doesn't bother me. I suppose I invite criticism because I do befriend people that a majority find impossible to like. There is something in everyone - this goes back to my shipmate on the Iowa that I blogged about earlier. Everyone has something special within them. Appearances and first impressions are not, always, definitive. What else about me? I anger quickly behind the wheel of a car. The LA traffic drives me nuts!! I spend too much time being wounded because someone didn't think about my feelings before saying/doing something hurtful. I'll ask myself too many times why my feelings would be ignored? Do I invite people to trample my emotions? Is it something that I do that brings that on? People don't feel they have to consider me? I don't know. But, I witness others being considered all the time - what am I doing that discourages such behavior? I wonder if some of it is because people assume I'm okay without it; I won't be angry or feel slighted. Or, I just don't warrant the caring part in some people. That sucks. Earlier this evening I read the devotional for today and started crying. I asked God what was love on earth for? If He asks for us to devote our love to Him and to relish in His love for us above all others, then, why do we have the capacity to love? We are meant to love and be loved or it wouldn't be the all consuming emotion that it is. It is the most powerful emotion we have. Love can empower and destroy. What other emotion does it like love? So where's the love for me? Why don't I have someone that loves me above themselves - or, above others? Am I not worthy of such love? I can't say that I have never been loved, I have. But, not by one that endures. My children love me but, even that is removed by several degrees. I love them in a way that I would lay down my life for them. I love Joe in a way that I would give him a kidney if he needed it - without a doubt. I love easily. I fall in love all day long. I fall out of it, too, but, still - in love all day long.

 

I, suppose, I worry that my face will scare someone. I don't know how I would react if someone shrieked when they looked at me. I feel like the beast on beauty and the beast. Thankfully, that hasn't happened, yet. Instead, I was hugged by my coach today. He made a gesture about my face and hugged me. That was very sweet. I needed it, too. I spend time talking about my face. Everyone in my workspace knows I am in chemo and they assume the rash is from the treatment but, if a conversation presents itself I will mention it. This usually leads to a lot of questions about the chemo. I feel this is a great opportunity to explain what chemo is, how it works and why the side-effects are what they are. Awareness, awareness, awareness.

 

 

So, my appearance challenges me in that I worry what others think. I don't like the way I look but I don't have to look at myself if I don't want to. What others see when they look at me is my concern. Do they see a good person and did they see a good person before? How can I take this experience and make myself a better person? I'm figuring it out.

 

This is the rash before the last round of chemo. My hair is still like this.
My next round of chemo is in 7 days.

This is the rash after the second round of chemo before the rash on my cheeks
became raised, pustules followed by bleeding. I might post that picture later along with
the red burn-like mark on my breast (I am assuming its from the radiation).