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.



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.