WISHFUL THINKING

If Only It Worked Like That 

Well, no such luck...I am agonizing, here. I was thinking, a few days ago, that the reduction of carboplatin might alleviate some of the side effects - no, not at all. I am in total agony. It started Friday night and by this afternoon the bone pain is horrible, the nausea is horrible and the weakness is -you guessed it,  HORRIBLE.  Last one like this. I tried to forge ahead and go to church today. In fact, I made it there with Natalia. In the middle of corporate prayers I felt weak and hot. Valerie was sitting with me in prayer as I was too weak to stand. I had to excuse myself and dash for the ladies room. I was sweating and weak with intestinal pain. I started praying. Then,  I couldn't, even,  do that. Ethel came in and started running cold water in the little sink and soaking paper towels for me to put on my face,  neck and scalp. It helped and I am grateful to her. I took my hat off in front of her and didn't care. I don't have to hide that from her,  of all people. She is only concerned about my well being. Natalia came to see if I was okay and waited outside the bathroom. When Ethel and I emerged I asked Nat to go start the car so it could cool off.  I sat on some steps just inside the front doors and Ethel and Valerie brought ice water in a cup and cold paper towels. They stayed with me and fanned me. They were worried about me driving home. I assured them I could make it once in the car. Ethel helped me out and she prayed for my safe journey. I was carried home today. We walked into the house and the smell of whatever was cooking turned me green. Nat turned on fans and opened doors but it was so hot it made me faint. I went upstairs and turned on the only working A/C in the house; my little stand-alone next to my bed. It took all of my strength to undress and find a t-shirt. I dropped to the bed close to the cool unit and fell asleep. I slept for a few hours. When I woke I ventured downstairs for a bite of tuna and milk. Because of the heat,  I came back upstairs. The food didn't sit well and my stomach cramped. I walked,  swiftly,  to the bathroom but nearly passed out because of the heat. I doused my head with cold water and went back to you room. Here I am. I'm grateful to Ethel and Valerie and Natalia. Today, someone was helping to take care of me and I was not alone. Ethel knew what I  needed in that moment and I can't express  how wonderful it felt to have that. We are all feeling along in the dark until there is another who has gone before you. I am grateful to have heard from my friend (the one that can/can't be my friend) at work - last night and today. I didn't expect it. It brought me such inner happiness.  Surprises like that restore my faith in humanity. And, of course, to have the steady support and friendship of Scott and Darlene makes me feel very, very fortunate.

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.



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.

 



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).
 



Resolve

HANGING ON TO RESOLVE

 

I wondered why Dr. Palmer made a point of staying positive. In fact, I've heard it a few times from doctors. I am beginning to see what they are talking about. The effects of my second chemotherapy mimic the first. There is nothing that compares to the physical and mental degradation of chemo. While I, still, feel like I accept my treatment and I will go through it, I'm not so sure about everything else. Do I want to continue working...really? Do I want to be around people...even those in my home? I can't answer those questions, honestly, right now. I am wondering if my fight to stay at the workplace is a waste of time. The drive, alone, is trying. My eight hour work day turns into 10, 11 with the drive. My paycheck is shrinking and letters arrive, regularly, addressing the increasing cost of my benefits because of my absences without pay. One more notice and my entire check will be gone to dental and vision benefits.

 

My appearance is unbelievably horrific - and I'm only into treatment number 2! Physically, I feel terrible and mentally I am challenged. It isn't vanity. It's frightening. I don't look like me. I'm a horror movie version of me. -And, it's only going to get worse.

 

I trapped myself in storage on Saturday. I thought it was a good idea to go out there and sort through boxes and rearrange. I was feeling horrible from the Neulasta and had no appetite, so, why not? I moved slowly and pulled things out and looked inside tubs, bags, boxes, etc. I had the goal of finding my military treatment records and a copy of the NIS investigation from the Azores (my compensation claim has not budged since July 2013 and it is a 90 day turn-around claim - a special ops claim...the Regional Offices keep passing it, virtually, around and not doing anything with it, so, I am gathering all the evidence and going to my POA to figure out what action to take - pretty bad since I work at the VA and can't get anyone of authority to intervene...veteran's first, right? Not at LA). I, eventually, found myself in the back, left corner surrounded by boxes and no way out. I had my cell phone in my back pocket and called Joe to dig me out. I couldn't figure it out myself and was so weak I wouldn't be able to anyway. I was overwhelmed and exhausted. Every bone in my body hurt - not ached, hurt.  My muscles were non-existent. My body felt like it had been electrocuted. I was fried on the inside. And, continuing to cook. I contemplated crying. Sometimes, there is nothing else to do but cry. Just as I did when I couldn't figure out how to open a document on the computer the day before. A and B were not connecting in my brain. Nothing was making sense. So, I cried. Joe arrived at the storage unit and removed the things that were blocking me in. He said "you really are blocked in there, aren't you?". In a nice way. He took the few tubs that I hadn't gone through and put them in his car so I could go through them at home. We put everything back in the unit and headed for home. I took a shower and sat, numbly, on the couch. I don't know how long I sat there. Joe has been helpful and sweet, lately. He built a fire for me and hugged me when I cried from the pain. He has made me smile, too. I am grateful.

 

Food. I seldom talk about food. Right now, I don't want to eat anything. I don't have an appetite. The smell of anything cooking turns my stomach. I don't throw-up, though. It hasn't been that bad, yet. The taste of food is missing, as well. I think about how food used to taste and it's appealing but, then think about eating and the appeal goes away. So, I nibble. A bite here and there of something I think I can tolerate. Today, it wasn't much. A little tuna, blueberries, a large spoon of Joe's salad and Ensure. I drank a lot of water and 2 cups of black tea. It's the only tea that doesn't taste like lead. Ginger ale seems to have some taste, as well. Over the next couple of weeks some of my appetite will return but the taste buds will stay compromised. As Dr. Palmer said, whatever food gets me through is fine. Right now as I type this blog I can't imagine eating anything. It's 0253 and I can't sleep. I called off work, already. I am aching and uncomfortable. My period doesn't help matters. Prayer does. Think about God, talk about God, pray to God. That brings me comfort.

 

Head coverings. I've tried the long scarves and a few hats and was frustrated. The scarves were too bulky and tying was a chore. The hats I had didn't sit right on my head and were uncomfortable. But, I have found a few things that work - especially, while I still have hair all over my head. The scarves from TLC American Cancer Society are great! The hats from Stein Mart are working well for me, too.

My favorite! Betmar, New York. Cotton!

When my hair is out completely. Light!! Capelli, New York.

I LOVE this and will use it with a scarf for work. Fits great, feels good!
Laundry by Shelli Segal, Los Angeles. Wheat Braid.
 



Found this at the Grove, LA. Sunscreen built in! Kallina. 100% paper!! A little
heavier than the others but very soft and comfortable!



Found at Reflections, UCLA Medical Center. Light, close to my
natural hair color and the edges look like the hairline! It's almost
impossible to see that it is a wig when I wear it! "Elle", Jon Renau.