STUFF...

Sometimes there is no better way to say it...stuff:

     I DID get to the garage, after all. What an intimidating task! But, I played Madonna's "Die Another Day" mix on the CD player and went to work. I managed to re-pack, stack, move, remove, unpack, throw away, and sort for 3 hours. I needed help getting the head board and foot board up the steps (I'm going to paint them white and use them in my room). I asked Joe to help with the side rails as spiders had taken up residence all around. He obliged without a complaint. He looked all around the garage for the other side rail and, nothing! Hopefully, it's in storage.
     I felt fine at the end of the day. A little sore in my lower back - I have had trouble with this part of my back since starting chemo and, now, with the Tamoxifen, it's, likely, not going away.

     It dawned on me, yesterday, that I should have been keeping a written account of my weight and blood pressure. My weight dropped steadily from my first visit to Dr. Schmit through my first 2 rounds of chemo. Then, it slowed and steadied until the first run to the emergency room, at which, time my weight plummeted 10 pounds. Throughout the other 4 rounds of the cocktail chemo my weight bounced around those last 10 pounds. Since starting my treatment of Herceptin, only, with the Tamoxifen pill my weight has held steady; 20 pounds down from pre-cancer body. I am 182 pounds. I have had battled Hashimotos Hypothyroidism for about 14 years and struggled to control my weight. I lost weight, in the past, by eating, almost, nothing and exercising 3 to 4 hours a day. I could maintain that plan because I was living, alone, with Natalia and working for the newspaper, freelance. I dropped her off at school and went for a brisk 2-hour walk along the waterfront in Washington, North Carolina. I picked her up from school and worked out on the Total Gym for 2 hours. We ate salmon for dinner and fruit as a snack. I cut out anything and everything with sugar - that eliminated much! I tried adding palates after dinner and fell asleep positioning for the plank maneuver. I laugh at that memory. But, with all of that I was the weight I am now. When Natalia and I moved here I started jogging around Lake Balboa every day after dropping her off at school. I dropped another 10 pounds. Then, I went back to school - Pierce College. My exercising took a back seat and, by then, Joe was driving me crazy with criticism. He has always told me I am beautiful but, he was, excessively, pointing out every flaw, real or imagined. Poking, pinching and constantly obsessing about my weight, "when am I gonna see the girl I met in 1979?", he would say. It got to be too much. I shut down, all together. I, guess, I felt if what I'm doing isn't enough why am I working so hard? Needless to say I regained the weight. When I finished school (2, great, years at Pierce and 2 online with Ashford University) I went to work at the VA as Non Paid Work Experience through Voc Rehab (Part of the Chapter 31 that I went to school under). I, almost, didn't take it because I felt so horrible about how I looked. And I did look bad! I felt so bad about myself because of being so ripped apart emotionally that it began to turn my appearance into something terrible. I didn't have any clothes to wear to work except for 2 outfits I managed to buy for myself when I worked as an Inspector at the voting polls. Otherwise, I hadn't bought anything for myself in years - nothing that I had from my newspaper days fit. I was embarrassed but, I went to work. No make-up, my hair - oh my hair! It was down to my waist and I asked Natalia to cut it to my shoulders...she did and then I chopped at the bangs and sides..it was sooooo horrible! But, I went as a NPWE, getting paid a stipend, only, and hoped I could go unnoticed.
     Anyway, my weight is an issue! After all that blabbering, I just did!
     My blood pressure has been high and low. With weight gain it's higher. Working at the VA, it is higher. When I go to a doctor appointment on a day that I don't go to work my blood pressure is, usually, around 125/76. It's been as low as 113/76. On a working day it's, usually, 154/84. The entire time I was off of work it was, consistently, 120-130. When it gets to the 154 range I notice my heart beats laboriously and I have palpitations.
     My feet and ankles swell unbelievable at times. Dr. Glaspy told me they would do that for another few months.
     The hot flashes seem to have amped up a bit with the start of Tamoxifen. I'm less embarrassed by it at work, now. Everyone around me is aware of what I go through. So, when I whip out my hand fan or turn the electric fan on high, everyone knows why.
     I opened the latest issue of US magazine and there is a two-page product plug, 'USbeauty' and all of the items purchased support breast cancer research, mammograms, etc. I love finding things like this! Some of the products look like they have been developed for breast cancer patients, as well; mineral hand cream by Ahava, dry shampoo by Bumble and Bumble (great for those SAVI radiation days if you can't make it to a salon), wrinkle smoothing day crème by Elemis, Jergens cherry-scented lotion in a bottle that last for months (during chemo) and Avon's evening gel-cream packs. I want to try them all. Then, there are the products that, simply, support the cause but don't, really, fit the cancer patient; tweezers (most eyebrows fall out) and nail polish (we have to keep our nails free of polish during chemo to monitor discoloration, etc.). What, really, caught my eye is the rose-gold plated charm on a Swarovski pearl bracelet: refillable fig fragrance beads. Beautiful and reasonably priced at $85. I'll put that on my Christmas wish list. :)
    Church today! I think it's the day we eat, too! I didn't make anything - oh no! I forgot!! Yikes, let me see if there's something in the fridge from the plane I can take.
     Tonight is Universal's Halloween Horror Nights! Can't wait for the Walking Dead maze!!!!!!!! I have wanted to go to this for years!!!! Woo Hoo!!
    

I FELT DEATH COMING

DEATH WAS COMING FOR ME

 

There was an awful period of time, yesterday, that I could think of nothing but the moment - the agonizing moment, that I was in. I crawled around my bedroom floor and sat around the tiny wastebasket and back to crawl a foot or two and on my knees leaning over the little wastebasket. I was in so much discomfort I couldn't cry. Heaving yellow and, then, dark brown, into the miniature can and the pain shooting from my lower, right back to my abdomen. I was sweating and I was cold and I was reaching for water and the heating pad...and heaving, heaving. I would stand and walk hunched to the bathroom in time to heave into the toilet bowl or the sink or the wastebasket. I never felt my feet touch the floor. No time to grab a scarf or hat - no thoughts about such things. And, the blood from my uterus. Dark and red filling the bowl as I heave into the wastebasket. Back to my room, the same way in which I left, I grabbed at things, the book, the pillow, the stool and found my phone...no glasses, I couldn't see what I'd type. I started pulling on my sheets, from the floor, and my glasses fell beside me. Heaving, I held onto my glasses. Pause, I could only text 'help me' to my daughter. An eternity later, she sent "with what". I could not cry and I could not say. She came to my room at one point and asked what was the matter. I don't know what her mind saw. I asked for Joe. He knocked before entering. I told him I couldn't stop throwing up and the pain was too much to bear. I don't know what his mind saw. He used my phone and called the office of Dr. Glaspy. The answering service was irritating him and he became upset - he raised his voice and told her to stop asking the same questions! Get the doctor! Dr. Cohen was on call. She said to try and get the anti-nausea pills down and Tylenol for the pain. She apologized for the terrible turn of events. She talked about alternative ways of getting anti-nausea into my system. She hung up. Time passed and I tried to keep the pills down - I couldn't. The pain was now in my throat and the reddish/blackish goo was heaved into the little wastebasket. The pain was worse. I called Dr. Cohen back and she told me to go to the nearest Emergency Room. I texted Joe "pls". He came in and got my things together. I hunched and floated to the bathroom. He asked me if I had another shirt. I don't know what he was seeing. I changed into something - I don't remember. Joe went to the car and started the air conditioning - I don't remember. In the car I heaved into the zip-lock baggie. There were not thoughts except that I was in terrible pain and I was going to die. I was dying. I was dying. All the petty things that weighed my heart and my mind the day before did not exist. I was dying. All the petty resentments and feelings of neglect - gone. I was dying. Nothing matched the weight of dying. Nothing is as important as the moment you die. I have never not thought about the other person - the thoughts, the feelings until I knew that I was dying. In that moment I was completely selfish - for the first time in my life - with my thoughts and feelings. That bumpy ride to the ER that I don't remember except for the bumps, I found myself to care about. I gave me, only, to care about. In that moment. I wouldn't laugh because someone wanted me to, I wouldn't cry because someone walked away from me, I couldn't cry for another. And there was Joe. In the distance he was talking and helping me from the car, carrying my bag, holding me upright, helping me into the wheelchair, answering the questions, and in the room "I hate chemo", he said to the nurse. If only it was the chemo - I was dying, I heard in my head. And then the IVs, the blankets and Joe leaning over me to keep me warm. Fixing my head covering and pulling my sweatshirt together around my shoulders. He was kind to everyone and they were to him as they were in and out of the room. He texted Natalia and cartoons were on the TV but he leaned over me to keep me warm and I glanced at this phone - stock market graphs and I was at peace. Some things were said to me and I could not respond and I didn't try. I couldn't respond to make someone else 'okay'. Hours later I looked at Joe as he was fixing my blanket and he said "you're eyes are green when you're in pain". I nodded. Something my mother told me when I was giving birth to Stephen. The pain in my back and abdomen was her pain. Before she slipped into a coma, she looked at me and was in such pain, in that same area. Her eyes were desperately pleading for me to do something. She was dying. And then, she died. It was a few days after her piercing pain and, then, coma but she died. I was dying just like she did. In that moment of dying I couldn't call God, her, my father or my beloved JoeWildhaber. The pain of dying robbed me of any moment that would allow me to call on any of them. But, Joe was there - right there. He filled that gap and that made it okay. I didn't need to call on anyone, he was right there. And when the IV bag was empty and an injection was given, I was told to take 4 pills of potassium. I did but my esophagus is tender. But, I did. The nurse brought me ice water and Joe said "is the ice okay for you?" - he knows I don't drink ice water but, I said it's okay. And, soon we were going home. I was not dying - not yet. It WAS the chemo. Cumulative, I heard someone say. The effects get worse the longer you are on it. The seat of my pants was wet, like I wet myself but I didn't. Just the outside of the pant seat. Joe said it wasn't noticeable and we walked out slowly. He held my hand and helped me in the car. I thanked him for wiping the vomit from my mouth and the tears from my eyes. He told me a funny story about a guy in a leopard print speedo that he helped from a car accident - he covered him with his coat as the eyes all went to his speedo after the paramedics cut away his clothing. At one point along our drive he reached over and rubbed my arm and said "I love you".

 

let it go – the
e.e. cummings
let it go – the
smashed word broken
open vow or
the oath cracked length
wise – let it go it
was sworn to
go
let them go – the
truthful liars and
the false fair friends
and the boths and
neithers – you must let them go they
were born
to go
let all go – the
big small middling
tall bigger really
the biggest and all
things – let all go
dear
so comes love

Resolve

HANGING ON TO RESOLVE

 

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

 

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

 

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

 

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

 

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

My favorite! Betmar, New York. Cotton!

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

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



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



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

 

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

 

 

 

 





A Beautiful Day

EVERYTHING'S GONNA BE ALRIGHT...

 

Yesterday I was feeling, still, a little ill with food/drink running through me but, I told Natalia we would do something after school. We had talk time and shopping! I was glad to hold up as well as I did and, in fact, as the night wore on I felt better. We stopped at the Cheesecake Factory and I had salmon and she, chicken Alfredo. My sense of taste is still compromised but I could taste the tea, the sauce and Nat's banana cheesecake. When we were going back to the car it wasn't me that had to stop for aches and pains, ha ha, but Nat. She ate too much. I, secretly, was glad because she would stop so I could 'cradle' her and walk with my arm around her to the car. Happy days.

When we got home I went upstairs to see what Joe was doing; playing his guitar watching a Liam Neesan movie. He got up from his chair to hug me and say 'welcome back'. I was stunned but, of course, hugged him back! I was afraid to let go in that I may not be hugged again - or, at least, for a long while. So, I hugged until he let go. I made a conscious effort to energize every particle of my body with his energy for as long as the hug lasted. Inside, I thanked God and thanked all those that prayed for him to reveal some piece of compassion. I stayed in the room and watched some of the movie (not my genre) with a cup of tea. I took every second in and committed it to memory. He was playful for a minute and, in general, like the old Joe.

I slept on the couch - I tried to fall asleep in Joe's bed but my cough and the draft from all the windows kept me up. I made the 'tent' on the couch and took Benadryl, lorazapam, and one of the anti-nausea pills with sleep aid. I drank a cup of tea and put two logs on the fire. I woke to the alarm at 0600 and checked my condition. My throat was still red and extremely sore (otherwise, I feel just about normal!)so I texted the Pastor and apologized that I would not be able to attend the Revlon Walk for a Cure. I had already paid my registration and had my 'team Dimples' (Ethel) T-shirt. I hated to miss it. It was nice of Annie and Ethel to update me on the event and send pictures!! I will see what other walks are happening soon and attend the ones I can.

When Joe came downstairs today I was a little apprehensive...not sure if the good will of the night before was still in there. It was. He took my hand and we went outside to the back patio and he hugged me for as long as I wanted to hug. Then we sat at the table and talked about what to do for his mom on Mother's Day. She declined a visit. Joe told me his brother wants his electric guitar back. I know Joe is baffled by this - they traded guitars a long, long time ago. I know why it is, though. I asked Sharon to ask her brothers to all pitch in and get Joe the black fender Stratocaster that he has wanted for 30 years. She said she would make it happen. I wanted to give this to Joe this year for his birthday- since I am working. Well, that didn't work out but, I didn't want him to wait another year. Nat and I picked up what I could afford; a white and red baseball t-shirt (retro 3/4 length sleeves) exactly like the one he is wearing in a late 70's picture with his guitar, new jogging pants (boy, does he need them) and a pick maker. He can make his own guitar picks out of stuff around the house. I'll make a gluten free, sugar free, wheat free cake.

 

Here's to hoping it lasts because it sure feels right, right now.



Physical Pain Subsides...

FINALLY, SOME RELIEF

 

It is mid-day and I, finally, have some relief. It isn't anything I did or didn't do, but, some of my aches are lessoning. The joints and mid-bone pain is much less. My stomach is calming down and my insides aren't writhing in agony. Food is still, mostly, tasteless and runs through me. I feel a little stronger and clearer of mind.

 

 

I told Natalia I will talk to her after school. I want her completely aware of what she is doing and how Joe is manipulating her. Then, if she, truly, doesn't feel the need to care about what's happening to me then that will be that. I won't bug her about it anymore. I know that being a self-absorbed teenager will be a tough memory to live with. She'll always look back at how she dismissed me during my hour of need and she will mourn. No matter what anyone says to her to let her know that it's 'in the past' or 'she was young' she will always feel bad about it. I don't want that for her. I don't want her to need someone at sometime in her life and no one will be there - I worry about things coming around. I want her to always be loved and looked after. But, if she continues turning into Joe she is headed into a life of heartache.

 

I don't know if Joe read the letter I left him (he didn't say) but, he said "good morning, how are you feeling?" He warmed some chicken noodle soup (homemade) for me and asked if the Benadryl he bought was the right kind. On his way out he tapped my shoulder and said he'd see me tomorrow. I am grateful. He may not do this again for a long time - if ever, but, for right now I am grateful.

 

I see Dr. Glaspy at 1630 and we'll see about work. I have to ask him why I'm bleeding so heavily right now and my breasts are in pain - a full-blown menstrual cycle on steroids. I'll ask him about vitamins, too. 

 

Jorge dropped a few dollars on the card...I am so thankful to him!!

 

I am thankful to my church family. Without their support and compassion I would be alone with God. I would rather share the word and love of God. He is alive and working between us and with us and for us. I feel him more evidently when He is part of a discussion. Jesus I feel in my darkest, loneliest moments and within the deepest shadows. Sprits surround me and are easily found when I need. I know, in that sense, I am never alone - But God did not intend such an existence. He is within all of us and intended that we compliment and fulfill one another while we are earthbound. To love one another, and ourselves, for the spirit we possess - Godlike.



Dumbfounded and alone

REALLY, I AM ALONE??

 

I went to work Monday and Tuesday. It was extremely difficult to be 'there'. I was aching all over, sick to my stomach and not of a clear mind. My aches and hurts were not like anything I've ever felt. Tylenol doesn't work and the sharp jabs of pain are in the deepest parts of my bones. My joints will hurt randomly and stop me in my tracks. The aches throughout my mid-section are indescribable.

 

It isn't a stomach ache or intestinal virus or any thing else relatable. It is a discomfort I can't explain. Each organ reacting to the chemo, I guess, and stretching, trying to breath. Nothing can fix it. Antacid, Pepto-Bismol, Alka-Seltzer - or any of the 'go-to' remedies can't be gone to. Just hold on and pray.

 

It would be most helpful if I had help at home, though. Someone who knew what meds I should take and asked how I was feeling once in a while. I would love to come downstairs and see someone making little bite-size samples of food for me to try - just to see if anything had taste and I could tolerate it. How joyful it would be if someone ran a hot bath and said "this might help". Better, still, someone would come into my room and see if I was okay. If I hadn't gone into Natalia's room on Sunday and asked her to check in on me once in a while, I would have gone the entire weekend without seeing anyone. Joe stayed downstairs watching TV. I had to ask him to get something from the store and he came back with the wrong thing. I asked him for the tub stopper and he said there wasn't one. He went and picked one up. Then he went back to the TV. I couldn't bathe in the big tub because the jets were full of junk and needed cleaned out...I tried but ran out of strength. I rested about an hour and went into the other bathroom and cleaned out the smaller tub and was able to soak a little bit. It was difficult getting out by myself, though, and I won't do that again.

 

Sunday night I cried on the edge of my bed. I don't understand how someone lives in the house with their partner of 8 years, who has cancer, and is ignored. How is that possible? Joe doesn't come up to me and hug me for no reason and say "I love you" or "we'll get through this" or "you'll be okay" or "don't worry about anything" or "if you can't work, its okay". How about a gesture of some kind? Ask me if I'd like to go for a ride. Is there anything from the store you need? Why not pick up a magazine or a book I've been wanting to read? I could use some time on the couch watching a movie with his arm around me, maybe smoothing my hair and holding my  hand. Nothing. He walks by me and says nothing. He is okay that I drive my 20 year old Saturn to LA while the newer explorer sits totaled in the garage - yes, the one he totaled and now tells me I can have. What makes him this way? I know people who take care of their loved ones; husbands, wives, friends, family, children. I know how I took care of my mom. I took over her medicine to make sure she took them on time - one less thing she had to worry about. I tried foods that would appeal to her - whatever foods she wanted to try. We rode along the waterfront and to the beach. We took her to the mall if she wanted to go. If we could have done more, we would have. There is something in us that takes care of another instinctively. No one wants to see their loved one sick or suffer but you know that the compassion and comfort you give means more than medicine. So, what makes a person turn against you and treat  you like an unwanted animal when you need them most?

 

I wrote Joe a letter and asked him those questions. My final question was "I need you to love me completely - what do I do to make that happen?" I'm sure, of all the letter, he will zero in on the last few words and have a list of things for me to do (cook, clean, exercise, don't be so serious, laugh more, etc., etc.) - knowing this, I added "remember, I have cancer".  With that, I'm sure he won't acknowledge having read the letter, at all.

 

I never would have imagined Joe turning out to be like this. He had his faults and could be passive-aggressive and mean but, I never imagined he would be like this. He has broken my heart a thousand times and again a thousand more.

 

I am afraid Natalia is learning from him. He takes her shopping and has been splurging on her all while doing nothing for me except make my situation more difficult. She doesn't stop him and say "you can't do this for mom then you shouldn't be doing this for me". She, in turn, does nothing for me either. She doesn't come home from school and stop her rambling to ask how I am. She is resistant to do anything I ask her to. She has helped me very little and sporadically. The more comfortable she is around Joe's behavior the more she is becoming like it. She must feel that if it's okay for him to ignore me then it's okay for her, too. I give her more of a pass but not much. Natalia and I have been closer than two peas in a pod and I am her strongest ally and supporter. No one loves her like I do. So, why doesn't she care if I am okay or not? It's easy for her to walk by my room and not look in. It's easy for her to roll her eyes when I say 'I'm not feeling well enough to go out to eat'. How is this possible? I guess it would be best if I had a hole to crawl into until this passed. Then I won't have to worry how I burden others and I won't have to be hurt by lack of compassion.

 

I know if I were on the east coast near my family things would be different and I would be cared for and about. If Natalia were there with me she wouldn't be acting like this either. She would have others there to look to and she would learn how to be in this situation.

 

I talked to my Uncle Ron Stegall in Maine and my Uncle David Kanke in MA. I'm glad I did. I got something different from each and I hope to keep them close from now on. They are the closest thing to my parents alive. When I talk to Ron I think of mom, when I talk to Dave I think of Dad. And, it's nice that they talk about my parents, too! Very comforting. I would like to have these phone calls in person, though, with everyone. What a difference a face makes.

William Blake 

The Day After the First Chemotherapy

The Day After the First Chemotherapy

 

 

I didn't sleep through the night but, I was warned that that may happen. The pre-med designed to combat some of the inflammation from one of the chemotherapy drugs will wind me up and disturb my sleep. But, I was able to fall back to sleep pretty quickly.

 

 

When I woke up at 0730 I went to the bathroom and had the most painful urination that I can ever recall having. I had talked to Dr. Cohen about the chance that this would happen considering one of the chemicals in the chemo and my predisposition to cystitis and kidney stones. So, it really isn't a surprise. I called in to the doctor and spoke to Debbie, a nurse. She was vigilant in getting through to a doctor for me! There are no doctors in the Porter Ranch clinic today, but, she persevered! I was prescribed microbid and felt better after the first dose.

 

Otherwise, I had some stomach bloating and feet swelling. I did not experience any nausea or vomiting - at all! I didn't feel much like eating but I drank some decaf green tea, a protein drink (kind of like Ensure but for diabetics - less sugar), Greek yogurt with honey, and later in the evening salmon, brussel sprouts and mushrooms. I didn't eat much of any one thing but after the salmon I felt that my body had been missing food.

 

I went to Macy's and picked up a couple long skirts and some body lotion with spf 30 by Clarins and an anti-aging face moisturizer with spf protection, as well. I talked to the ladies at the counter and the Clarins clerk was very helpful and made me feel better about the Philosophy lotion, Amazing Grace, that I love; I don't have to give it up and switch, completely, to the Clarins - just use the Clarins where my skin is exposed to sun and use Philosophy everywhere else! That's just what I'll do! But, it is so important to keep the exposed skin protected. I will pick up a hat at Reflections next time I am at UCLA Westwood.

 

I bought a dozen bras for the brachytherapy patients. Mostly larger sizes - just thinking of the Savi candidates and the space needed inside the breast, they must have larger breast to accommodate the device. I could be wrong and, if so, I will go back and get smaller sizes, too. I am going to wash them in Dreft this weekend, package them in individual Ziploc baggies and attach the tags to the outside of each one. I am going to attach a note to Allison with my phone number so she can let me know when to bring more, if she needs different sizes and colors. I am very happy to do this and I hope the patients love the bras as much as I do!

 

Tomorrow I will return to the clinic for the Neulasta. I could have gone to work today, that's how well I felt. But, I've been very cautious about touching doors and things that others touch. I keep a bottle of Purell close by at all times.

 

While at the Family Christian Book Store I chose a little boy in Ethiopia to sponsor. His name is Sefu Nasir and he is 9 years old. When the clerk explained to me how World Vision works and all the great things my 35 dollars a month will do, I could not walk away without sponsoring. I wanted to take a handful of kids around the world to sponsor. I can't wait to hear from Sefu and to start our correspondence. I understand there will be a huge celebration in his village that he has been chosen to be sponsored and everyone will be happy for him. My contribution helps with education, introduction to Christ and to keep him protected from child trafficking. Inside the little 'book' I received with the sponsorship is a little video of Sefu - he is adorable. He waves and says nothing but he says so much. I feel so fortunate to be able to sponsor Sefu!! I know there is a chance that I can visit him and at some point I would like to! It really made my day to find this little boy.

 



The adorable Sefu Nasir of Ethiopia