...and downward, roller coaster

THE BIG DIPPER; MOOD

I'm in the car with Joe and Natalia heading to Joe's mother's apartment in Riverside. It's her birthday. I'm surprised he asked us to go. I bought her a book, bookmarks, cards and a scrumptious pumpkin spice bundt cake from "Everything bundt Cake" in Valencia. I jumped at the mini road trip.

My mood has continued on its steady decline. I'm crying and isolating more. I hate looking at myself in the mirror. My nails (what's left of them) are atrocious. I didn't jog for two days because I injured my foot; I dropped the solid oak table on it this past Friday. I was feeling good after my run; my pace was faster and breathing easier. I cleaned the kitchen and decided to swap two heavy tables- that didn't go so well. The pain was so intense that I couldn't breathe! Then, I started crying at the thought of telling Joe that I broke his table (I heard a 'crack'). I wasn't worried he would be angry but that he would give me the usual head shake and some comment meant to make me feel small, stupid, and useless. He was reluctant to look at my foot when I asked him to help me determine if it was broken. He was not interested and, in fact, was annoyed. When I started crying and apologized about the table (it wasn't broken) he told me he's used to me breaking things-without looking up from his  computer. I can't try any more. I'm so exhausted from trying to communicate and drained from trying to always be upbeat and not talk about cancer and treatment. I give up.

I made an appointment for UCLA OB/GYN so we can start tracking my uterus for the duration of tamoxefin. I have to tell them how wreck less I've been, too. I haven't said anything to anybody about my wreck less behaviors except my journal. It's time to tell a doctor and go from there. That scares me a little bit. 

I'll work 2 days this week- hallelujah!

That's me in uniform. Happy veteran's day.

Herceptin is NOT chemotherapy

 

 

THAT'S IT? THAT WAS CHEMO?

 

I have to clarify because I can't believe it myself. I was under the impression that I was going to be in "chemo" for a year. But, as Dr. Glaspy informed me yesterday; chemo is over! I went in to have my Herceptin infusion and, afterwards, visit with the doctor. He came into the exam room and after asking how I was doing said "how's it feel to be done with chemo?". I said, "great!, but...Herceptin isn't chemo?" and that's when he told me that it wasn't a chemotherapy drug and that's why my hair is growing back, my skin looks better and I am not having the harsh side-effects that I was having before. Herceptin is a monoclonal antibody. The pill, Tamoxifen, is a hormone drug. Chemo is done. When I left the office and walked to Ralphs I, just, kept saying that was chemo? Chemo is over? If I had understood that when I had had my last infusion I would have made a bigger deal of it being over!! We discussed, briefly, my ankles and feet; they are swollen beyond recognition most of the time. Dr. Glaspy said they were "Taxotere ankles" and that they would return to normal in a few months. He knows that they can be pain painful but assures me it's all expected.

 

I went on my 2nd run (if you can call it that) today. I was able to jog a little farther today than I did the last time. It started out like the first run and I cried a little bit from the pain and sluggishness of my body. But, it passed quickly - thank you, Marshall Mathers. The knee braces that I purchased after the last run work great! My knees did not hurt during or after the run. I snapped a picture of Puppy as she greeted me home.

 

 

My hair is growing back, noticeably, now. I am including a picture of my head and my right breast. The scars are healing nicely - the incision made by Dr. Schmit to remove the tumor has healed to, near, obscurity. As has the incision he made to remove the lymph node. The incision made by Dr. Demanes is not as obscure; the small cut is obvious. But, there were no stitches to close the wound when the SAVI was removed so, the healing has been different. There, also, appears to be tiny poc marks on the skin of the breast around the area of the SAVI. I don't know what that is but, Dr. Schmit didn't take note of it so it must be okay.

 

I am on an abbreviated work schedule, now. Monday and Friday off so I am able to rest. In fact, I'm ready for a nap right now! Whew! I am so tired all the time.

 



 

 

 

LEGS

Darn the SWELLING 

I stayed home from work today because of the swelling below the knees. I didn't plan on taking off, though. 

I attended a dinner at Lucille's smokehouse at Valencia mall last night. When I got home my knees, calves, ankles and feet were swollen beyond belief. I had Hagrid legs. I, still, intended to go to work. My alarm did not got off at 0420 as it was supposed to. Joe woke me up at 0520 and asked if I was taking the day off. I said, "no" and jumped out of bed. I felt the pinch in my toes and sat on the bed. My feet and ankles were very swollen. I called off and went downstairs for tea. I talked to a coworker about a problem he was having at work and then I went back to bed. Hours later most of the swelling had gone down. I kept my feet up on the recliner and worked on school assignments (I am so far behind). 

Later in the evening I removed my nail polish and noticed my middle finger is about to lose the nail. I could feel that it was lifting around the edges but the visual confirmed it; the nail is cloudy white like the part that grows out of the nail bed. the left ring finger nail is discolored. My toe nails are okay.

I was able to stay on the elliptical for 30 minutes while watching Gotham on TV. I am happy with that after the way I felt Sunday night. Natalia and I went to Halloween Horror Nights at Universal Studios and by the time we left to come home I, seriously, thought I would need help getting to the car; my hips and joints at the top of my legs hurt so badly I wanted to cry. I had to walk slowly all night and I hope that it wasn't obvious to Nat or anyone else. I told her that my joints were hurting and I needed to walk slow but I didn't want to put a damper on the evening. Sitting didn't help. I prayed to make it to the car. One foot in front of the other. Once home I went straight to bed. The pain was worth it to have that experience with my daughter. We have wanted to be a part of the Walking Dead mazes for years!! Another check on my bucket list.

Monday, I filled out the requested forms that will change my full time status to part time; I typed a letter to the VSO manager, O'Meara, filled out a SF71 (of which makes no sense to me) and the VA form to change status. That, with the letter from the doctor, goes forward for approval. There are others working part time due to health restraints so, there should be no problem. Lenny has been great at work. Completely, lifts my spirits. The last batch of new VSRs have returned from Baltimore and I have reconnected with the few that I had established relationships with...all good!! 

Chemo on Thursday. 

Still no word on my car. 

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