MY DAUGHTER'S WORDS

A BIRTHDAY CARD CLEARS UP EVERYTHING

 

     Natalia gave me 2 birthday cards on my birthday. Joe gave me 3. We ate at Yamatos in Stevenson Ranch. After dinner, we went to the closest pet store and bought a clear, solid, plastic hamster cage for the baby squirrel we rescued the night before. I want to dedicate this blog to my daughter and her words.

     I, often, wondered what she was thinking at any given time, but, especially, now. She isn't always expressive, physically or verbally. I have asked her and we have talked - she's slept in my room, at times, and hugged me spontaneously. But, mostly, she was not forthcoming with thoughts and feelings. I saw signs of discomfort; overeating, sleeping, staying in her room more, running me relentlessly (I would, rarely, tell her 'no' - I knew our outings were, probably, the most important way I could communicate, to her, that I was 'okay') and school grades slipping.

     Two birthday cards told me everything I needed to know. The first one with Gollum on the cover describes our ability to laugh at and with each other over all things. Laughter opened the door for her to learn about my condition and to not be, so, afraid. Her humor and willingness to bring laughter to any situation is good for both of us.

     The second card is very beautiful and sentimental, but, her hand-written words bring an ache to my heart as much as it calms my sadness. She is not cold and unfeeling - taking her cue from Joe - but, rather, unsure what she is supposed to do. Had Joe been a better man to me he would have been a better father to her and she would have seen what it is that a loved one is to do in this situation. These are her words:

 

         

Happy Birthday Mom. I love you so much this has been a rocky 2014 for us all, especially you. I really don't know how you do it! All of it; work, treatment, and still want to do fun activities with me. lol. I don't think anyone realizes how you much you actually go through. I do, to an extant. But really, I would be sleeping and just eating 24/7. You really are an amazing woman mom. I cant tell you how much you mean to me. Without you, I would have nothing...really nothing. You make me want to do better and all that. You're always there for me and always comfort me etc. lol. P.S. How do you put up with me..REALLY.

   I don't "put up" with her. I love her and would give my last breath to save hers. My great fear was that she was learning how to be unfeeling and distant toward me during this troubling time; should I die she will have a horrible time reconciling her emotions - the loss of her mother and her behavior during my run with cancer. I tell her, always, that I know she loves me and that our bond is beyond what can be described with words - I don't want her to regret anything that has to do with me.

    My daughter's words.

 



UPDATE LONG OVERDUE

IT HAS BEEN TOO LONG BETWEEN BLOGS

 



     It has been a stressful couple of weeks since my last blog. Work, car, money, home...way too much stress for me.

     The Saturn is, still, sitting, unused in the driveway. Joe and I have been going to LA to take me to work every day. Then, he returns to Newhall and takes Natalia to school and himself to work. He picks Natalia up after school, come to the Federal building, I drive him back to the Van Nuys airport, get Natalia to showchoir, dance or whatever function she needs to get to then back to the airport to get Joe. I can't get any school work done on time. I'm exhausted. So, why is the Saturn not being driven? Because it didn't pass the smog test. Joe and I split the mechanic's bill to fix something with the spark plug (I don't remember what it was) after the first smog fail and that didn't take care of the problem. The 2nd smog test failed, as well. I spent the last of my paycheck on the first repair. The, nearly, $500 ticket for going through a red light and the $300 registration didn't leave me much to spend on the car. Joe said he was broke, too. He told me that when his income tax return came in, he would use it to get the Explorer, in the garage, fixed...that's not going to happen. He changed his mind. He said he would use part of his return to get the Saturn fixed. I don't know where the tax return is. I'm not surprised. Every man I have ever been with have been anxious to get the bucks for my children and me as deductions but, then, I never see a bloody red cent that they promised. Anyway, the Saturn sits and we run the other one into the ground. I was paid this past Friday and after phone, storage, WorldVision, hospital and doctor bills I have $200 left to put on the car. I'll see if I can pay less on a couple of doctor bills in case the car bill is more than 200. I HAVE to have my car. I have my suspicions about this whole car thing...I'll keep it to myself, for now. 

     Suddenly, Joe is in control of my air conditioner in my room. He's been coming into my room and turning off my A/C and opening the French doors. It wakes me every time. I have a hard time sleeping when I am not cool with the hot flashes and it isn't cool enough outside to satisfy what the A/C can. After he comes into the room I can't fall back to sleep; I am hot and sweating. It's, usually, 3 in the morning before I can doze off. I'm tired before I start the day. The stress at work and the running after work makes me so tired I can't get my homework done nor exercise. Well, I had enough! Last night I locked my door. Joe was so irritated that he began texting me - repeatedly. Then, knocking on the door and calling my name until I woke up and went to the door. He started saying something about the door being locked and the A/C running. I wasn't, quite awake, and I was dumb struck, as well. I heard my phone alert me to another incoming text message but, I ignored it as I stood in the door waiting for Joe to start making sense. Then, he said, "what's going on, you got the door locked and the air conditioning running. I'm beginning to worry about you, what's going on?" All I could say is, "what??"  He was saying it in a way that he was trying to cover himself for being so fricking anal. How dare he come into my space, wake me up in the middle of the night, and decide if I use the A/C or not!!   I am, continuously, amazed at his lack of rationale and common sense. What is he thinking?? He was yelling at me over the phone tonight because my daughter calls him 'cookie' as a nickname. This is a nickname she has called him since she was 7 years old. I have called him that, too. It's something created out of love. He decided that the nickname is stupid and that until I make Natalia stop then he's going to call me 'Heather' instead of 'mom' around her. I told him not to do that. One has nothing to do with the other. I am her mother and 'mom' is my name. He asked what the big deal is. I told him he is trying to create a disconnect between me and Natalia and I don't want him calling me 'Heather'. He flipped! I guess because I hit the nail on the head. he isn't aware that I know the head games he plays for power and control. He kept kicking me until I told him to stop being abusive. I told him that something must have happened at work and he's taking it out on me. He admitted he's playing manipulative, control games and that that is too bad. He can't play them if I'm on to him. Why is he acting out more than usual? I haven't let him push my buttons and make me upset in a long time. I was upset when he pulled the $40 stunt in the car on the way to the oncologist and, even though, I was not in the wrong and he was playing a power/control game I apologized. It's not worth staying upset over. Maybe he's wound up because I'm seeing Dr. Schmit on Monday and he knows how much I like Dr. Schmit. Joe had confronted Dr. Schmit all those months ago and has never let up. The more I express my respect and admiration for Dr. Schmit the louder Joe refutes UCLA and contemporary medicine. All the same ridiculous babble he spouted in the beginning of this journey. Internet web education. Yea, that's going to change my mind about cancer treatment options. No thanks, I'll stick to medical journals - published ones. 
     He's been telling the flight attendant all his woes. Evidently, he has her believing he's a nice guy and that I brought all kinds of baggage from previous relationships and take it out on him. That's what I got from the conversation we had yesterday. Joe's the 'nice' guy and I'm a horrible person. She's defending his lack of sympathy and compassion for me (his discussions with her, not mine) because he was scared. Really?? She defends someone walking away and ignoring the basic needs of compassion for someone with cancer? Really? He must have weaved some wild tales to get her to take that stance. NO ONE understand that position, AT ALL. Whatever, right? It's his story to his friend. However he wants to spin it so he can sleep at night.
     As far as Joe is concerned, I'm feeling defeated. He's not changing. He will not change for me or our family. The cancer, the treatment, - no matter what I do for him and no matter how much I love him, he's not going to give it in return. He's only going to hurt me and abuse me as he always does. He will not let God  touch his heart and charge his spirit. Through all of this I have given him everything I have and, then, reached within myself and gave more. I loaned him the love I have for others on the bet that he would return it ten-fold. I lost the bet. 
     Dr. Glaspy had interesting thoughts on our last visit. I need to hear more of his wisdom and confidence. 
     I also, need to be with the ladies of the church! Today was so amazing! Darlene picked me and Natalia up and took us to Acapulco restaurant for lunch with the ladies of New Zion. They were having the lunch for my birthday. It was, absolutely, wonderful! The food the conversation and the presents. Ha ha. They were, all, so generous and thoughtful! I can't thank them enough for this blessed birthday.       
     Marsue sent a, very, pretty piano to hold small pieces of jewelry with a note that I never forget our adventure. :) - A little reminder of our joint venture to connect the Liberace dots. It was fun. I hope we do more of the same with...say...Errol Flynn? Fun!
     My birthday at work was very nice. Darlene brought delicious cupcakes and an inspirational t-shirt. Bryan, Scott and John went to lunch at Veggie Grill with me and Bryan bought my fake chicken taco. Leroy gave me movie tickets. It was a nice day all around!
     I know I jump around in these blogs and there are times when the grammatical errors, nearly, make the blog unreadable. I thought about going back through them and editing but, that would take away from the truth of it. That is my state of mind and my ability (or lack of it) to process through words. Every missed comma and/or misspelled word is part of the story - my story.                                                                                             

Free to be poked and prodded once again...

 

 

 

LUCKY ME, ALL CLEAR FOR CYSTOSCOPY, ET AL...

 

 

     I had the cystoscopy with Dr. Sender yesterday. It went well; nothing irregular in the bladder or the urethra. The scope, itself, was uncomfortable but, I've had this before so I knew what to expect. I'm still sore today and it hurts to pee but, it's getting better. It's worth a little discomfort to be thorough. Dr. Sender was Dr. Sender and his dry sense of humor made the visit a little more bearable. It's odd that a urologist has such a good bedside manner. Or - it, just, seems odd. I don't know, maybe they have the best bedside manner. The urologists that I have been to were military or VA - that's no laughing matter.

    

     When I got home after the doctor appointment and picking Natalia up from school I was in pain. I helped myself to 4 Azo, 4 motrin and 1 lorazapam. I took Natalia back to school for her showchoir practice and went to bed for a nap. Hours later, Natalia was shaking me awake. I slept through phone calls, alarms. door bells, and banging on the door. I didn't hear any of it! Natalia had to get a ride home from a friend and break in through a window. Joe had tried to call and when I didn't answer after so many tries he called a neighbor. The neighbor came over and rang the door bell and knocked on the door. Nothing. When Natalia, did, wake me up it wasn't a relief that I was alive (you know, 'thank God, I was thinking the worst', kind of thing). I don't know what they were thinking. Did they think I just decided to take a nap and ignore the attempts to wake me up? I don't know, it's weird how neither of them said anything about it. Well, Joe, did, say that when I see the neighbors (that he called to ring the doorbell) that I should smile and wave and say 'hi'. That's weird, too. At least Joe offered to drive us back to the house when I picked him up from work last night. Joe asked how I was today - if I was feeling alright when he got home from work. I appreciate the question. I know it's something so small in light of the situation and its enormity but, it's all I get and I'll appreciate it. Sure, I would love a flower and a card now and then or a hug and words of support - how about, a surprise night out to dinner and a movie or a ride along the coast. Yes, there are things that I would do if the roles were reversed; I would always let him know that I loved him and that he would get through this. I would comfort him in any way I could. I would go with him to doctor appointment and chemotherapy. I would ask what he needed. Mostly, I would be paying attention to his situation and helping where it was obvious that I could. I would get him an electric blanket for the chemo room once I knew how cold it was, I would make a tray of sampler foods to see if any of them would taste good to him during chemo, I would make sure he had all his meds and took them as prescribed (it gets crazy around chemo days and which meds when can be overwhelming), I would help him shower and change his sheets knowing how sweat stained they get....on and on and on. But I am the partner of someone who doesn't think of these things. By saying 'let me know if you need anything' he's off the hook. I spend too much time thinking about all this. I think I'm over it and accept it for what it is and then the hurt and sadness of being neglected hit all over again. I guess I will have to deal with it over and over until I have found a permanent place to put the bad feelings and memories to rest. Everyday work out.

 

     I took the day off of work today because of the discomfort when urinating. I don't drink as much water as I should when I'm at work and I knew I needed to drink a lot of water. The car situation doesn't help motivate me to go to work, either. As long as the Saturn is not road ready (2 failed smog tests) then I don't want to go to work. The trouble it takes to get me there and pick me up make me uncomfortable. I don't like infringing on anyone - even Joe.

 

     Dr. Glaspy said I was doing very well. Now that I am on Herceptin, only, I'm ready for 5 years of Tamoxifen. So, I started it today - 20 mg a day. I'm not so sure I'm the candidate that the medicine was designed for but, it's an added precautionary drug - free radicals and all. He talked to me about other things as well...I told him newfound fear kept me from making the decisions I was quick to make before cancer. He told me, emphatically, that this cancer was NOT coming back. I believed him. He stared at me with those steely blue eyes and never blinked. For a minute or two I, completely, felt what it was like to be cancer free. I didn't realize how much baggage cancer has been to my every day until that minute when I felt it was gone. Of course, as soon as I left the office I felt the way I always feel and that brief, wonderful moment was a memory. Maybe, I should record Dr. Glaspy saying that and I can listen to it every day. Hmmm, that's a thought. He'll think I've lost my  mind if he doesn't, already.

 

     My mood overall hasn't been very good. I seem to be noticing all the negative things about myself and perceive my future as the beginning of the end. Maybe this is an adjustment phase to a new reality...time will tell.

 

    New rules and regulations at work. New coach, new rules. Every coach has their 'new' things they want to dump on the employees. Some of it works great and most of it doesn't. So we muddle through until the next new coach. I wouldn't mind so much if the coach had experience in the department and brought an organized, researched, productive form of change. But, they don't. They come in and see mass amounts of work and minimal amount of people and, without experience in it, come up with attempts to lower the work and overload the people with favorable results. It never works. People get frustrated always having to bend to the ridiculousness of a new coach. My suggestion would be to a new coach "come in and get to know what it is that we do. Sit with the employees and watch the process. Take notes. Ask questions. See what it is that the employee needs to make the process more efficient.". But, no one asked me. At least with this one I see the mistakes big and bold and can address them. Some of the actions need to be addressed by the union representative 'cause they look a lil' illegal. I'm just saying

 

     I decided to drink greens instead of trying to eat them...did I blog about that, already? Well, anyway, this week I blended an apple, banana, avocado, matcha green tea power, flax seed oil, mixed chard and 2 cups of water. It doesn't have as much taste as the last batch...I think because I used water instead of apple juice. But, I like it better because it isn't grainy at all; it's very smooth.

 



 

 

On and On...

 

SO MUCH FOR NO SIDE EFFECTS

 

     It has been, exactly, one week since my single chemo Herceptin has been infused. I was excited about having no side-effects but, I am having some reaction. My feet and ankles are, terribly, swollen. I had some swelling the day before chemo - as I usually do, but it didn't go away as it has done in the past. It has gotten, increasingly, worse. So stretched is my skin that it pinches. I have tried more water intake, walking, exercising, no salt, less food (in general), and more veggies. Nothing worked and the swelling got worse. I didn't go to work today. I awoke at 2 a.m. with intense pain in my mid-section. It was enough to make me nauseous. I used a heating pad and propped myself up in a semi-sitting position in bed. I was able to fall back to sleep around 4:30 a.m. I didn't wake again until Joe came in and asked if I was going to work. I fell back to sleep and until 7:30 a.m. My pain was gone and the swelling was down in my feet and ankles, but, not completely gone. I called Dr. Glaspy and left a message. He messaged back to come in . I'll see him in a couple hours. I hope Joe does not go in with me. He has to take me as we are down to one car (what a nightmare getting back and forth to work, getting Natalia to school and her events, and Joe going to the hangar). Maybe, he'll do to Wal-Mart across the street while I am in there. -Or, just stay in the lobby/waiting room. So, we'll see what happens.

 

     I decided to blend some greens because I know I'm not getting enough of it in my body by eating it and the store-bought drinks have too much sodium. My end result: 1 cup green beans, chopped, 2 cups leafy greens, 2 tablespoons flaxseed, 2 tablespoons matcha green tea (powder), 1/4 cucumber, chopped and 2 cups apple juice. At first, I only used 1 cup of apple juice and the blend was too thick. I added another cup and the blend was thinner and tasted better. I have enough for a few days. I like the idea of getting the greens without having to eat them.

 

 

 

In spite of my ankles, I went on the Liberace tour (of my own making using Marsue's specifications)for Marsue. She has been reading about him and is interested in places he lived, his office building, stars and burial place. I was more than happy to go around and find these places!! It was a long, hot day but I had much fun!!! I went into the office (no trespassing) and up the elevator. I couldn't access the Penthouse but I got off on 4 for a brief minute! This was a great distraction and I love this sort of thing!

 

The Sherman Oaks home with the piano pool. This is the house that was broken into and his mother assaulted.

One of his stars on Hollywood Blvd

His other star on Hollywood Blvd.

The Hollywood Hills House

The office building in Beverly Hills

The elevator inside the office building

 

Forest Lawn Cemetery, Hollywood



SO FAR SO GOOD.. .

...HOLDING MY BREATH

I was given the first chemo of my new phase - herceptin - this past Wednesday; it's Saturday and I am feeling fine. With the previous Chemo, I would be suffering by now. 

Dr. Cohen told me I  was "one tough broad" as we talked after chemo. Our conversation was about my limitations with herceptin (for me,  none! ) and follow up care in regards to my kidneys and bladder. She assured me that I would be feeling better in about 6 months and I  told her that,  although, I had my days I never,  really,  felt that bad. She smiled and made the comment about me being tough and then went on to give the example of the kidney issue/bleeding and my calm, matter-of-fact demeaner while dealing with it. I work,  I hike,  ride horses,  walk, run up steps, laugh, and live each day to the fullest as I am able. I know how fortunate I am to be doing so well. That's, exactly, the reason why I push myself beyond what my body is telling me. I am so blessed. It may be my imagination,  but,  it seems the pitted scar on my forehead (from neulasta) is healing. The hair on my head is growing; I have a good stubble going. I am, still, tired, but, not as debilitated. 

I bought a bottle of green vegetable drink last week and have been drinking a glass every morning. I follow it with ensure. This seems to be keeping my digestion and intestinal track running smoothly. My sleep is,  still,  disturbed. I wake up sweating and my heart racing; typical of nightmares but I don't remember the bad dream,  if that's what wakes me. My short term memory isn't great,  yet. I don't fret so much so long as it's not severe. 

Work has been stressful but I  put that on myself . My standards for myself are higher than what anyone has put on me. I need to, constantly, remind myself to calm down. Lenny has been an awesome friend and our friendship continues to flourish and surprise me with depth! I am grateful beyond words! Without the beautiful relationships established in the workplace the job would be colorless. God bless my friendships.