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.

 



 

 

 

At This Juncture...

IN BETWEEN EMOTIONS

 



     I stayed home from work last week and today. My alarm went off at 4 but I called off. I was up at midnight and from that point slept a few minutes every hour. My throat is sore as I do my best to ward off a cold. Physically, I feel better than I did yesterday and yesterday I felt better than the day before but, I feel the effects of the 6th round of chemo, still. An ache in my jaw or my knee; a turn in my stomach, the paste that sticks in my mouth. I know I'm not myself before chemo. I don't know when, if ever, I'll be that body. It is my hope that I am a better body when chemo is done, completely.

  
     My emotions are something different. I am not sure what they are right now. I'm not, quite, depressed, but not as buoyant as I have been. I would rather be home and in bed than outside or at work right now. My dreams are shrinking, once again. I can't conjure a future or a mythic future, even. I'm holding fast to the idea of running. I'm waiting for the green light that will, hopefully, come on September 3rd. That's the day I start the single chemo infusion of Herceptin. My legs are weak right now. The thigh muscle burns when I walk. The back of my thigh burns when its stretched - even, the slightest. My arms are weak. The flesh hangs from my upper arms and neck. My waist is flab. I have no strength or muscle at all. I have a vision of myself running strong. I hold on to that.



 
     I let Joe see my bald head yesterday. He tried to look at it the day before and I didn't allow it. But when he asked yesterday, I showed him. Natalia was trying to lure me away from doing such but, it is what it is. If he can't deal with my bald head he needs to grow up. He seemed okay. I told him that I don't have any deformities or dents or odd lumps on my head and "it's still me, just me with a bald head". He agreed. He said it's much better than me holding on to the scraggly head of hair I had before it was shaved. He asked me, this morning, when we were home by ourselves, "are you looking forward to your hair growing back?" Yes, I am. Joe's sister-in-law said her hair came in curly. Mine will come in normal. It will be wavy and thick; probably gray-white. I'm fine with it. Right now I have a 5 o'clock shadow on my head.






 
     I enjoyed the New Zion Women's Conference and am so grateful to my and Natalia's sponsors. After the Saturday lesson and the conference closed Natalia and I walked around the Los Angeles County Arboretum in Arcadia. It's beautiful. Natalia was resistant, at first, and complained. But, once we started walking and she saw her long lost kin folk she perked up. As we walked along a paved way she saw a dirt path in the thick of the trees and cut in. I followed and, like an oasis, we found our selves at a little lagoon. The trees closed behind us and the paved road and people were a memory. I felt like I was in a moment from "Narnia" and walked from the closet to the wilderness. The lagoon looked man-made and as we found a path around it we saw a small waterfall. We walked along the outer edge and followed the path to a large, natural lagoon. We crept across brush and down to the edge. Across the width stood a beautiful old 'cottage'. A large white and red trim Victorian house. We had to back out from the edge of the water and find a path to take us around the large lagoon to the house. It was hot but we were determined. On the porch of the house we stood where Angela Lansbury filmed an episode of "Murder She Wrote". :) That made me very happy. There has been quite a bit of filming around this house and the grounds. The Coach Barn rests across the vast expanse of lawn. In it there is a private coach, restored, and stables. The smell of the wood still fresh. Absolutely a thing of beauty. The trees, flowers, and lawns - peaceful and soothing to the soul. But, as I said before, HOT! After we walked to the large waterfall and lily pond, we turned around to go find the café. We were both parched and hot. We joked that looking for the café was like making our way to the extraction point on "Naked and Afraid". Natalia laughed because I couldn't lift my feet and my arms hung at my sides as we trudged in the extreme heat. I was thinking 'I can't make it, where's the courtesy golf cart? I need to sit, where's the benches in the shade?' But, I kept walking. I didn't stop until we were in the café and I had a bottle of water. On the way out of the café we crossed a female peacock. She was moving, fairly, quickly and I didn't get a decent picture. At the bottom of the steps Natalia caught her breath and she said, "Mom". I hit the bottom step and looked around the bushes. The most beautiful male peacock I have ever seen. the tail must have been 6 feet in length. He didn't move. I was able to get within inches and take pictures of his amazingly bedazzled head. He flicked his head here and there but, his body remained immobile. We walked around his tail and waited to see if he would fan it. He didn't. After several minutes he turned, slowly, and walked into the bushes. He squawked once and was gone. And so were we.

 

 

GONE, BABY, GONE

LET IT GO

Gladly!  I made the decision to let the remaining hair from my head go and get it shaved away ! I went to Fantastic Sams on Lyons next to Starbucks. Wendy took me back to the break room and worked her magic. She was wonderful!! ! We made a date to revisit when I have enough hair to play with! :)

The responses from my family have been sweet and funny!  Two commented that I, still, look like Susan Sarandon. Vickie said I looked like Steve when he was 2, lol,  and all said I am beautiful. Adam said my hair will grow back more beautiful than before and Steve said he missed my "pretty face". I get teary over such lovliness from people I love.
When I told Len (my name for the friend/no friend /friend at the VA) that my hair will probably come in all gray he said it would look good on me. What a sweet thing to say. The little things. That's all it takes to restore the human heart to full bloom. To remove the shadows of clouds and low hanging branches ; the infinite sweetness of a bright smile and soft word.

I am,  still,  feeling weak- too weak, for my liking and my thinking is off kilter; I was in bed most of the day yesterday and when I woke late in the afternoon I couldn't remember any one's face. I was so anxious that I couldn't move. I laid in my bed and brought a name to my lips, one after another, and tried to imagine the face. I couldn't. Not one. I thought of my sons, my grandchildren, my daughter, Joe, my sisters, people at work, my cat - nothing. I couldn't see my cat when I said her name, "Puppy". Nothing. It scared me terribly. I wondered if I was losing my mind. Was I having a break down? Should I call the doctor? I broke out in a cold sweat and shook uncontrollably under my heavy blanket. I became very hot under the blankets and sweat ran like rivers from my head to my pillow but fear kept me frozen in place. It grew dark outside my balcony doors and soon after, I heard a tap on the door. It was dark enough that I couldn't see but a shadow of Joe as he opened the door to tell me he was going to Home Depot. I heard the car pull out and I forced myself up quickly. I pushed my aching body down the stairs to the kitchen. It was quiet. I went to the front room and laid on the couch. I listened to my heart racing and felt pain shoot up into my jaw. I knew I had to calm myself down. I started taking long deep breathes. I thought only of my breathing and fell asleep. I awoke when Natalia came down to retrieve her school books. I went upstairs to my room, sat on the edge of my bed and thought of my sons. I could see their faces. I breathed a deep sigh of relief! I thought of everyone in my family and friends at work, long lost shipmates and grade school chums...I remembered all of their faces. I flipped my pillow and flopped down. I fell asleep quickly.

Today, I drove to the nearest Arbys to satisfy my craving for beef; Canyon Country. After paying for my sandwich I returned to the 14. I haven't listened to much music since cancer announced itself. I shut music down. I replaced it with talk shows and spiritual songs. I used to blast music in my car. It was an escape from traffic,  work and crazy thoughts. But cancer made it feel silly and frivolous. Until today! On the 14 I put in a random CD from the passenger door. Out poured Bruno Mars,  Locked Out of Heaven. A switch flipped and I turned it up LOUD. I stepped on the gas and shifted my 20 year old Saturn into 5th gear.  I flew!  Dancing in my seat I swerved in and out of cars as fast as the Saturn would take me. I didn't care what it looked like!- I was light!  I have never felt so light and centered and fluid! The mountains all around fed me with strength and protection and so I flew with Bruno Mars blowing the tiny speakers!  That's what freedom feels like. For a few minutes rules didn't apply to me. When I  reached Calgrove the down slope exit guided me back to earth. I stopped at its end and turned off the music. GPS told me I was at my destination. I smiled - not quite.

When Natalia was out of school she asked to go to the mall so she could get her ears pierced. Of course, I took her. There was an incident with one of the employees of a neighboring store and mall security (and I use that term loosely). I will share the details another time. The main point is that my confusion and muddled thinking put me in a very bad way when I would normally have been calm and rational. I was so upset I called Joe for help. He was upset, as well - mostly, because my state of mind makes me vulnerable. No one wants to think of someone in my state becoming frightened and confused. 

It all makes me feel very old. Or, do I, just, feel how old I am?

ROUND 6 DONE!!

MILESTONE REACHED!!

 

No one may understand the milestone that I reached today...round 6 is done! I remember Dr. Glaspy telling me in our initial meeting that "we are going to aim for 6 but, some only can take 4". I told him "I'm going to make the 6". I told myself that same thing over and over during and after each and every chemo. During the hardest of moments I would swear I was done and that I was giving up but, I knew I was expressing my feelings for the horrible things that chemo does to a person and I knew I wasn't giving up. By allowing myself those expressions, I also empowered myself. So, here I am with round 6 under my belt. The nurses were happy for me, too. Dr. Cohen was there to confer with me, as well. By now, she is a welcome face and I always look forward to seeing her. She referred to me as "tough as nails" today when I relayed the ER visit that I made on Saturday. I was well enough to go to work on Monday, though. I, do, seem to rebound quickly and completely when things happen like that. I am hoping that after this round that my body will rebound as quickly.

 

I, now, move on to Herceptin every 3 weeks with echocardiograms every 3 months. I had an echo today. I won't know how it looks until my first round of Herceptin, I suppose. I wonder when the hot flashes will stop? When will my sleeping return to something more normal. It is disturbed and I am, constantly, tossing and turning - cold and hot no matter how cold the room is. I have my portable air conditioning running all night and it can't keep me cool most of the night but ther are moments that I freeze and have to turn on my heating pad and add a blanket. Freezing turns quickly to sweating, though, and I'm kicking everything off.

 

I am going to shave my head in two weeks so all the hair will grow back evenly. I am lucky that my hair didn't fall out, completely.

 

In celebration of round 6 over and done, I went to the movies and watched "Into the Storm" at Valencia Regal Theaters. It was good. I was disappointed that the storyline focused on high schoolers. It didn't have the elements that I love about "Twister". The special effects were good in the new movie but, I prefer "Twister". Then, after the movie, I went to Stein Mart and bought an awesome new purse by Tignanello and two pants and 4 shirts. I spent $150. That's fantastic! I love Stein Mart because they sell outrageously priced "name brand" for less - and the sales are great.

 

Natalia and I went to church on Sunday and heard a great guest speaker. I bought a CD after the service to listen to him again. It felt great to be there this past Sunday. Fellowshipping is becoming easier and I feel more comfortable with everyone - like old friends. Natalia and I are being sponsored so we can go to the women's conference in two weekends! We are so excited! I wanted to go when it was first announced but knew I didn't have the money for us to go. Pastor asked me if I wanted to go and would I go if I had the money. I said "yes!". After the service we were told that we have been sponsored!! I am just beyond happy!!!!!

 

After church Natalia and I went to the San Fernando Mission Cemetery and Chapel. Everything is beautiful and peaceful! What a history!! And, Bob Hope and his wife are buried there within a beautiful garden that was added after Delores died. It has a babbling brook and winding pathway. There are other members of the Hope family buried within the grassy areas of the garden. It is located in the back of the Chapel. I'm glad to have, finally, made it there! I have wanted to see this Chapel and historic Mission for years!

 

Right now, I feel great. I don't know how long it will last. My carboplatin was reduced by 20% because of the kidney stones, bladder, head cold, fever and pleurisy after the last round. Dr. Cohen just felt it was time to give my neutrophils a break. I don't know how this will reflect in the side effects - will they be less or the same? I guess we'll find out in a day or two.

 

When I shave my head I am going to have Natalia take a very candid photo before and after. No sun glasses, adjusted lighting, right camera angles, or BB Cream! What's left of the hair on my head and my lined face. My skin has taken a beating and I have an indented scar from the Sweet Syndrome reaction to Neulasta. I am hoping my skin will return and I may have to go for plastic surgery to fix my forehead. Or, maybe not. The scar will be a reminder of what I went through and what I have overcome. A badge of honor. We'll have to see what bounces back and what doesn't. The treatment isn't over and I'm not out of the woods but, I have reached a major milestone in this fight and I am proud of my body and thankful to God and his army of angels from Heaven and earth!

 

"INTO THE STORM"

THE AWESOME NURSE, COLETTE

MY OTHER AWESOME NURSE

SAN FERNANDO MISSION CHAPEL AND NATALIA

 

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).
 



Second time around..

1/3 Complete (of this part)

 

I had my second round of chemotherapy on Wednesday. It was slightly less time than the first. I didn't sleep as restfully while in the infusion chair and came home tired. It was fairly quiet and we all watched a wolf roam aimlessly in the field across from the building. It looked sick and tired. I had my camera with me and was able to zoom in and take a few pictures before he (yes, he) ambled back across the street to where he came from.

 

Yesterday, I saw Dr. Glaspy for my follow-up to chemo and to have my Neulasta injection. We talked about the state of the VA and I told him that my letter for a second mammogram just arrived from the VA (this letter is based on the mammogram that showed a 'suspicious' area in December - yes, that one that started it all). Dr. Glaspy's chuckled and his eyes flew open! He said, "well, tell them there's no need now". We, both, laughed at that. He asked if there would be a time that I would need to use the VA and I told him, yes, if Joe removes me from his insurance, then, I would be back in the VA system. He seemed a little disheartened by that news. That's what the reputation of the VA system has become! Now, with the hundreds of patients dead due to long wait lists and lack of attention the VA has become a target for scrutiny - as it should! Nothing's changed with the VA. The care is substandard because the physicians/assistants don't care. They treat the vets like cattle and if the medicine needed isn't in the arsenal, guess what? You don't get it. The wait time for x-rays, specialists, surgery, etc is abominal!!!!!!!!!!!!!!! I could go back through my own record and show the travesty of wait times. Usually, I couldn't wait those times and went outside the system and paid out of my pocket or used a medical card. Thank GOD I had a husband (Jorge) who had a healthcare plan and Joe does too!! What state would I be in right now???? The compensation part of the VA is just as backlogged and just as much a travesty.

 

But, anyway. I am just beginning to feel the Neulasta and Chemo. Not as debilitating (so far) as the first round. Still, running every step I come across, though. Seems so insignificant but it is all I can do and I am doing it. It makes me feel like I am hanging on to that promise.

 

Still have my hair - thin but, covering. Dr. Glaspy feels that it will all fall out quickly, now. I bought a beautiful wig yesterday at Reflections in the UCLA medical center building. When my skin clears up I can put on a bit of BB cream and look like my normal self. My scarves arrived from TLC American Cancer Society and I am excited. Very Nice. The hats I picked up at Stein Mart yesterday are much improvement over the ones I had picked up at the Grove. I will put name brands and styles and pictures in here later.

 

I, sorely, need to catch up with my companion journal and I am going to do that now.

Hair...will not go gentle into that good night

MY HAIR WILL NOT GO GENTLE INTO THAT GOOD NIGHT

 

 

Do not go gentle into that good night

Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

From The Poems of Dylan Thomas, published by New Directions. Copyright

 

I still have hair around most of my scalp. It is extremely thin but, still there. I'm torn about it. Part of me wants it gone; if it's going to go, then, go. There is another part of me that is relieved I still have, at least, a little. I can have light bangs and some extending below the line of my hat and/or scarf. I am having problems with the scarves I bought in anticipation of my hair falling out. Because of the remaining hair I have trouble wrapping the long scarves around and tying them without tangling the hair. I can't swivel them around to center - same reason. The ball cap has a hard ripple in the under-side material that created a red indentation at the top of my forehead and it was irritating. The hats don't sit right on my head but are fine for slipping on with or without a scarf but, because of the rash on my forehead turning painful and spots filling with puss, the fit over the forehead is complicated. The slip-on scalp covers that have a little elastic on the bottom back seem to work the best for now but, even with the light ruffling, they are transparent so, the parts of my scalp that are thinly covered are exposed to the sun and can be seen, as well. I have to wear a hat with this cap. The hair impedes the fit a little bit in the back, too. As a result of these issues I went online and found a few things to try at "tlc American Cancer Society.org". I found a couple of pre-tied scarves that are shorter and designed for summer. I purchased a cool, sweat absorbent band to wear under hats that fits around the brow/upper forehead area and it is padded. In addition, I found padded, under the scarf caps; one with a wider band and Velcro to attach bangs and one that is cotton and fitted to the scalp so it doesn't show under the scarf. I bought a very pretty summer hat in black; it reminds me of something from the 1920's as it sits lower, has a short brim width that curls slightly, and has a very tasteful bow to one side. I saw a wig that I liked, as well, but I decided to go back to Reflections in the UCLA medical center building for a wig. They have a beautiful selection of synthetic wigs that are very reasonably priced and the profits go towards helping patients with a variety of needs while being treated for cancer. Hopefully, I will have this figured out before the treatments cease!

 

I went to the Porter Ranch oncology clinic and met with Dr. Palmer today. I called the oncology nurse yesterday and explained that the rash on my forehead had taken off in a different direction than the rash on my cheeks - which, responded very well to Benadryl cream and tablet. The rash above my left eye became dark red and painful. Pockets of puss formed and any contact, no matter how light, was agonizing. In the shower this morning, I gently pressed a warm wash cloth to clean the area and the puss pockets broke and there was a little bit of bleeding. The nurse, yesterday, said that it would be a good idea to see the doctor and she left a message for the receptionist to set me up to see the doctor today. My appointment was set for 2:20. Dr. Palmer is the New Zealand native I spoke to on the phone, not long ago, about my throat. He is very pleasant and thorough - quite charming, in fact. While he is accomplished with a very impressive bio, he is quick witted and ready with kind words of encouragement and advice. Dr. Palmer, patiently, reviewed the her2 positive information (aggressive) and, quickly, followed up with a good prognosis due to the use of Herceptin drugs. He, also, made a point to mention the importance of being encouraged and not in a state of despair (my words - I can't recall the exact words he used...kangaroos, etc.). When he said this I thought of the sculpture by Rodin that, recently, made the news because of it's discovery and value at auction. The statue is titled, "despair" and it, absolutely, is the exact bronze representation of the emotion, despair. I can, easily, imagine taking that position on my worst day of living with cancer. A body crumbles under the crushing weight of despair. Hands grab for something, anything, only to find a distended body part that buckled without consciousness and on they hold. There are no clothes in that moment because despair is felt most enveloping when it is able to pour out of the skin's pores and, completely, engulf the human body in it's cold, icy state of total vulnerability. The heat from within can only escape as far as the blanket of despair allows and the result is a cold sweat. Cancer feels more powerful when the body is naked. The balding scalp is more crippling when the body is naked. The rash and suppressed skin cells are louder when the body is naked. A harsh word and unkind gesture is more wounding when the body is naked. Rejection is debilitating when the body is naked. Disparity is in it's glory when the body is free of clothing. 

 



 

 

The rash on my forehead is the same rash that appeared on my cheeks but, we don't know what caused this part of it to turn problematic. I'm wondering if it's one of the creams I used on it. I guess we'll find out if it happens again. I'll make sure to note, daily, what I put on my skin and in my body from now on. Today, I return for chemo. It will be shorter - 4 hours instead of 6. Dr. Palmer was thoughtful and had the necessary labs done right then so I would be ready to go when I went in for infusion! Everything lab result that could come back while I was in the exam room came back in good form. Dr. Palmer read the results to me and gave me a copy of the printout. He said that if I ever needed treatment on a Tuesday I would be "stuck" with him. I thought of Huey Lewis and the News. :) I will journal the rest of the visit events.

 

Church was great, as usual, this past Sunday with a couple of odd and unexpected issues that presented themselves. I choose to share this in my journal and not here. I don't want to pass judgment or sound like I am passing judgment but, I have to flesh out my feelings about it and I'll do that with God and pen. I doubt I will be feeling well enough to go to church this Sunday, but, if I am well enough I will, still, take the day to stay home and pray in peace and turn over my concerns and prayers for those that crowd my thoughts today with disappointment. Natalia was feeling what I was feeling, as well. She was gentle in her manner of asking me if she could share her thoughts freely and I validated her feelings with my own. Therefore, it is important that she and I work this out with God in our own space and time.

 

Work this Monday and Tuesday was great. The coach was back to being awesome and we are in full swing for the new centralized mail processing. Unfortunately, I am not there for the first day of production! I, sincerely, am unhappy to be missing this. I have been designated as a super user and am honored that, in my condition, they have faith in me. My coach continues to trust me with special projects and I am, truly, grateful to him. At the end of Tuesday he asked me to train the two awesome former Navy NPWEs on establishing claims. I, quickly, typed an SOP for pre-screening claims to determine the manner of establishment to be taken. I didn't have time to go beyond that. I had a half an hour! But, they are shipmates and I am suited to train them as I trained in the Navy for years. Brian and R.J. are great young men and high functioning individuals. The VA will only improve their representation and production by hiring them quickly. They have been compassionate towards me and I am deeply touched. I want to comfort them as they feel for my condition. Shipmates. But, I would be remiss to not mention Scott - my former Air Force compadre. I've mentioned him before and I will say it again, I don't know where I would be without his unconditional, sincere and compassionate friendship.

 

Joe has been talking more and we have had very long, deep discussions - honest discussions without too much emotional reactions. I'm going to include the details in my journal. Overall, he is feeling good about the way I have been towards him and he feels the love. I'm glad. He is accepting of my love and I am overjoyed! He said he is still reserved and withdrawn and may never, completely, be open to me and without it. I can't worry about that, I told him. I need to let go of all the resentments and anger toward him and my needs not being met. He can't meet my needs because his being is what it is and he doesn't know how to change it nor does he want to. He said he "can't". So, we are at a standstill as far as all that goes. He knows that I am cleansing my body and spirit of the junk that it acquired since coming to California. I can only do what my soul needs to be in a better place. I need to know what my purpose is after treatment. I know there is something I am supposed to be doing. I was called to do it years ago and I took my will back and never found out what it was. I am gong to do what is within my power to restore myself and Natalia to our pre-California condition and then, make up for the years we lost; as before, I will love openly and unconditionally of all people and I will give generously and with compassion. I can't control how another person misinterprets who I am because they don't acknowledge who I am (some people gauge their own internal honesty and true unselfish nature - or lack of, as it is reflected in the works of others and if it reflects badly they become aggressive in their intentionally incorrect interpretation of the nature of the person and they pass it on). I can't force any one to ask questions before spouting guidance. It is wise to take the time to ask questions and get to know another persons journey before you assume you have to provide an abundance of "to dos" randomly. You are no ones master. Ask first, if you truly care. To give an example; you tell me to drink 4 glasses of water every day...how do you know I don't?? That is one of my issues that I pray about. I, really, think people that go around spewing their wisdom are offering a disservice to those they spew and to themselves. They create false assumptions about people because, in their mind, they 'have' to tell people what to do. They don't! Put down the soapbox and take the cotton out of your ears. Learn about another. I learned how to take the time - the most important minutes and hours one can spend - looking into the eyes of another human being and hearing the words they say. I better help the ones that share of themselves - I just had to stop, for however long it took, and listen. Jeff Rabey was my shipmate and subordinate in a section at Northwest, VA. He tried, several time, to share something that was plaguing him and I didn't listen, completely. He came to my apartment before a deployment and I sent him away. He left the following day and within a few days the gun turret exploded on the USS Iowa. We didn't know who died and who survived for some very agonizing long hours. He survived and I prayed for forgiveness. I vowed to never walk by another human being without looking into their eyes and acknowledging them. I promised myself and God that I would listen and hear what any and everyone had to say. I would take them in with compassion and wisdom. I have kept my promise.

 

Natalia and I went to the Grove on Sunday and we had a wonderful afternoon. It was a beautiful way to let go of what we were feeling after church. We went to Barnes & Nobel, Top Shop, Forever 21 and the Marmalade Café (delicious!). I talked to Steve (finally) and Nevaeh on the phone while we were there. I'm glad he has been so busy and getting the press, awards and recognition he so deserves. I can not wait to see him featured on the National Geographic Travel TV show!! He has been published in the  magazine of the same name along with other magazines. The Hogarth's Bar & Bistro in Williamsburg, VA is on the MAP!! He's worked hard and studied his brain's out on every aspect of food and drink since he was 16 years old - and I mean EVERY aspect; from around the world spiritual journey with food to connecting state of mind to taste buds, he has left no stone unturned.

 

Have I said how much I love, respect and honor my children?? Well, I will say it again, anyway. They are deserving of such as are the women/men they chose to share their life with and the children they raise. I love them all.

 

NATALIA AT THE GROVE

MY UNCOOPERATIVE RASH

THE INCOMPERABLE DR. PALMER

 

 

 

 





Vanity

VANITY...WHO KNEW I HAD SOME?

 

 

I never thought of myself as being vain or having vanity. I wasn't one to think through an outfit or spend hours on make-up - in fact, I seldom wore make-up. As a parent, I never thought twice about throwing my hair in a pony tail, slipping on shoes and taking kids to school in pajamas. Scars, burns, swelling - whatever, I didn't reflect on my imperfections and never thought about trying to hide them. So, here I am experiencing a few of the unpleasant side effects of chemotherapy and I am distressed. I have thought about not continuing with work, not going to school events with Natalia, and not going anywhere with Joe (not like Joe and I go to many places together, anyway). I have had a challenge getting to this blog and keeping up my companion journal! What is up with that?? I have lost the vision that this is temporary and that I will return to the way I was before. Well, I feel that I am a chore to look at and without any confirmation that I am NOT a chore to look at, then, the feelings manifest. I would be fine if Joe told me that my appearance was fine by him. I know, to him, I am not attractive - I haven't been for years and years but, if he loved me wouldn't he see past the way I look? If he were compassionate, wouldn't he feel that I needed affirmation? Of course he would. But, as I am learning he, honestly, does not love. He, honestly, has no compassion and all those other feelings that come with love. So, as he would normally be, simply, disgusted he is now repulsed. I can't feel bad about it, though. I don't want to look at myself! I look old. My skin, everywhere, on my body is drying and lining. I have been vigilant with my skin for several years because of hypothyroidism and my body skin is holding up fairly well, but, the skin on my face is impacted, terribly. The taxotere is causing my face to erupt in raised, red bumps. Mostly, on my cheeks and on one half of my forehead. My skin is drying rapidly. It looks like I have a thousand lines running horizontal from my nose diagonally to my ear. My jowls seem very prominent, too. I am pale in areas where the red bumps don't appear. My lids are sagging to new depths and I am bloated. My hair has thinned to the point where the pile on the sink is more than what is on my head. I have a bald area on the crown of my scalp. Behind my ears it feels like the hair is being pulled tight in a pony tail and when I rub it the hair falls out. I am bloated around the middle and my feet/ankles are swollen like clubs. The only condition that concerns me, from a medical stand point, is the swelling. I called the oncology nurse to talk about all the symptoms but, the swelling is the only one that had me worried. The nurse told me the rash is from the taxotere and to use Benadryl cream or pill and 5% hydrocortisone if it's itching. She said the swelling was probably from salt and not the chemo because it's, just, now appearing. She advised water, no salt, and walking. I am relieved it's from salt!

I tried to tie a scarf around my head to cover the bald spot and failed. I couldn't tie it in a way that was nice looking and would stay in place. I gave up and felt a little defeated at that moment. I pulled out one of the fitted caps with light ruffle-like material all over it. It doesn't fit right because I still have some hair - it doesn't look right, anyway. I looked at hats and none look right - I look stupid. Today, I'm trying the ball cap I bought several months ago. It makes me look stupid, also. What to do? I may have to look at wigs. I have resisted that idea all along but, I may rethink. I don't know...I have to rethink a lot of things.

 

I went to work every day last week except Friday (my face and swelling plus diarrhea and headache kept me from going in). I functioned normally and my brain was running on cylinders. So, why do I feel like my coaches are disappointed with me and don't want to bother? I noticed a change in behavior toward me this week. I, really, don't need this in addition to feeling the insecurities I, already, feel. I will be working Monday and Tuesday next week, only, unless chemo is cancelled on Wednesday. Otherwise, I'll be out Wednesday through Friday and, possibly, the following Monday and Tuesday.

 

My Saturn is on it's last legs, I'm afraid. I am going to have to check into leasing something - we all know Joe won't help me get a different car; the Explorer in the garage has been there for almost a year waiting to be repaired from the fender-bender he was in last July. He told me that was my car but, I think he's taking it back. His car is leaking somewhere around the engine block and so, he may, suddenly, find the urgency to get the garaged one fixed so he can use it. I'm not surprised. That's fine.

 

It was Joe's birthday on the 17th. I had asked his sister if she would ask their brothers to go in on a Fender Stratocaster for Joe. He's wanted one for 30 years. She said it was great idea and she would do it. On his birthday I texted her and asked if she had the guitar. She said she didn't and that, while it was a good gift, it was more sentimental between me and him and that the expense coupled with other things - she's not going to get the guitar. I don't think she talked to the brothers, at all. Meanwhile, his brother asked for his guitar back. He swapped guitars with Joe a hundred years ago. Joe was puzzled by this. I was thinking, at the time, that it was a prank because they were going to surprise him with a Fender - nope, he just wants his guitar back. His sister told me there was 'no way' Joe was upset by his brother asking for his guitar back...really? That's why Joe said he was going to break it first then send it back. His sister, also, told me that I should save up the money and get him one for Christmas and that he could go afford it for himself if he wanted it as badly as I said he did. Well, I used the school stipend money from my student load and bought his Fender. Not just any Fender - the "Blackie"! Of all Fender Stratocasters that I could have bought for him this is the one he would love the most! And, he does!! I have never seen emotion in him as I saw when he opened the guitar case and saw the guitar. He was speechless and overwhelmed and truly amazed that we did this for him. He was quiet and humbled and gracious. Natalia videoed everything. She and I are touched by his response to the gift and we would give him gifts like this everyday to see his reaction again and again. He thanked us repeatedly. He said no one had ever given him anything this momentous and special - he said it is the best gift he has ever been given. I know it is. You have to know Joe to know what this guitar meant to him to be given as a gift. The day after his birthday he texted another 'thank you' and said he can't believe there's a 'strat' in the house. In spite of how he is with me most of the time, he deserves a gift like this, especially, from his family. He does for his mother, brothers and sister. He is patient and loyal and giving. He is hard working man who asks for nothing from anyone. It probably sounds like I contradict myself when it comes to Joe. It shouldn't. I love him and want to be loved by him. He doesn't love me but that doesn't mean I don't, still, love him and will do for him in a way that comes from love. If I didn't love him do you think I'd spend my stipend money for a guitar?? - And not all the money went to a guitar...I bought myself a new camera; The Samsung WB1100F Smart Camera. :)

 

Ugh...I am posting pictures of my rash and disappearing hairline. C'est la vie.

 

NOT DIGGING THIS LOOK. That's Dr. Glaspy's card taped to my phone and my nails have been cut and polish removed. So far the discoloration is just from the nail polish smothering my nails.





The lovely rash. Imagine it redder        The beautiful flowers Adam sent for Mother's Day.

This picture doesn't show the red.



This is how it falls out.

 

 

    My crowning moment.             It comes out in tangled matts. There's my pile of hair.

 

 



The "Blackie"