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.

 

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"

Now I Understand...

Now I Understand Worry vs. Not to Worry; virus vs. Bacteria

 

Before church this morning I thought I should put a call in the oncologist on call; my throat is still extremely red and sore. Now, my sinuses are stuffy/runny and I'm coughing. I am not sure how Neulasta works against sickness, etc. but I am concerned about my immune system and this sore throat not going away! The female that answered for the answering service was rude. She said "this couldn't wait until tomorrow?". I told her that "no, as I said, I need to know if I should go to work tomorrow or not". She huffed and puffed and put a Dr. Martin Palmer on the line. When she connected us she was short and snotty with, "you're connected". I introduced myself and was brief with my concerns. Dr. Palmer started by asking some questions about my type of cancer and treatment, etc. and was, in general, very patient and thorough. He didn't seem miffed by my call, at all. The more he talked the more I detected an accent. He sounded Australian. He explained that the Neulasta would help against bacteria and the bacteria they are concerned about would not be acquired from other people. One of the chemo drugs threatens the lining of the colon (I think this is how he explained it, honestly, the accent and his soft voice I was imagining kangaroos hopping happily along the outback to the soundtrack of "Survivor") and the bacteria would enter there. So, I guess, as long as no one sneezes near my arse, I'm alright. But, for the viruses such as the cold, etc. there's nothing to worry about. I treat it with the "Nyquil and Dayquil of the world" just as I would any other time in my life. When I explained the petrie dish of bacteria that I work in he laughed and said not to worry. After we hung up I looked up his UCLA bio - he's from New Zealand not Australia. He has a very impressive bio.

 

Mother's Day service at New Zion was very nice. Good to see everybody and hear about what I missed at the Revlon Walk For Life on Saturday.

 

Natalia and I returned from church and I started cooking. Chicken wrapped in flour tortillas, cooked crispy on the outside and smothered in avocado, tomato, sour cream (not for me) and fresh squeezed lime juice. We watched, with Joe, "Fun with Dick and Jane" with Jim Carrey. Nat had never seen it before. We all enjoyed it. Then I opened my gifts from Nat and Joe (Nat picked them out). A record player!! A portable, suitcase record player. I have wanted one for a long, long time. I ran upstairs and grabbed my "Jimi Hendrix plays the Blues" LP and we, all, sat in the living room enjoying the sounds! Nice way to spend an hour or so. Joe picked up about 10 potted plants, too. All very pretty and colorful.

 

Adam made a very sweet statement on Facebook and posted our selfie (the same as the polaroid he sent with the gifts). I took a screenshot on my phone and I am going to post a copy here. I posted a picture of me and my mom on Facebook, as well. The best thing I can do for myself and my mother is to love her, now, and honor her memory. No matter what has passed between us while she was alive, I owe her my respect and an honorable memory - just as was discussed in church. I believe that with my whole heart and I am glad to have had that validated in church.

 

No word from Stephen. This makes me terrible sad - and worried. He wouldn't forget me on Mother's Day, ever, much less right now. I hope everything is alright.

 





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.



The Doctor's Report

THE DOCTOR SAYS...

 

...my body is taking chemo like a 'tank'! With a smile Dr. Glaspy gave me the good news, "you are a tank!" My body has taken the first round of chemo very well. My aches and pains and other complaints are nothing! The signs to look out for - that would indicate a problem - I don't have. He was happy to report, but I was happier to hear! Now, I can deal with what I feel and know I, really, am okay, as he told me before. I am having a period and the doctor said that's okay, too. I may have them all the way through or they may stop at some point...either way, it's okay. My nails are not discolored, my hair is still intact, no swelling, no vomiting, etc. Today, I feel pretty, darn, good. If not for the sore throat I picked up at work on Monday or Tuesday, I feel almost normal. This is a wonderful thing. I can weather through the next round knowing the discomfort will pass. I left the office without needing labs, too.

 

We talked about other things as well (my companion journal has this info) and I felt great after talking to him about them. Dr. Glaspy will do whatever is within his power to preserve my well-being. That give me great comfort.

 

I stayed home from work again today because of my sore throat. I am hoping this will pass over the weekend and I can put in a full week next week.

 

Am I too hard on Natalia? No, I don't want her to be consumed with me and lurking around every corner to see if I am okay nor do I want her worrying about my survivability. I don't want her losing the part of her that is compassionate, though. I know what it is to look back and REGRET not saying or doing something different before I lost a loved one. What was I thinking? That is a hard memory to live with. I am all Natalia has ever had, consistently. How would she live with herself, as an adult, when she is more aware, with a memory of dismissing her mother or complained about helping her? Natalia is a big-hearted, sensitive girl who has found it a form of escape to act like Joe. She has to know that it's okay to have all the emotions raging through her and to learn, in a healthy way, to address them. I want her to have fun with friends and continue doing 'teen' things but, I don't want the shopping sprees and lure of shutting out reality to permeate her being. I love her too much and she loves me too much. You can believe I will keep her on this side of the ledge.

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 Pain, The Pain

WHEN TO CALL THE DOCTOR?

 

I had a terrible, painful night. Of course,  not much sleep. My objective is to stay hydrated today and take the Claritin, pain pills, and other regular meds. I can't believe how much pain I am in even after taking pain meds. I feel like my uterus is on fire and my ovaries are being squeezed by a vice. I have radiating pains down my thighs and around my back. Should I call the doctor? No one talked to me about the pain of these organs shutting down. I wonder if anyone considered I was not menopausal or post-menopausal. I had been asked many times if I was still having periods. I always answered 'yes'. It makes me think that the pain I am feeling may not be normal. If I am pre-menopausal and this kind of pain is expected, someone would have told me, right?

 

I am so far behind in classwork and it looks like my teacher may not grade the papers I turn in late - so, zero's for all. She is aware of my situation and I am not asking for special favors but grade the papers, already.

 

I feel terrible. I am hoping that Joe's mother decides not to come up today. I don't want to move out of my room and have to change sheets, etc. to get ready for her.

 

I will call the doctor this afternoon if I experience no relief.

I called and was given the on-call doctor, Dr. Caul (?). She said the pain was most likely not my uterus or ovaries but the pelvic bone, hips, etc. I told her I was having pain before the Neulasta - she insists chemo doesn't affect the uterus or ovaries in pre-menopausal women that way. She told me to take the regular Claritin, Benedryl and Pepcid. Joe brought back 24-hour Claritin and I can't use that  - as far as I know. I'm trying to go by the exact word of the doctors. Joe laid the pills outside of my door and didn't bring up water. He never came in the room to see how I was or if I needed anything. I went downstairs to get water and some pieces of fruit. My mouth is really dry and I don't feel like eating. The pain doesn't allow for deep breathes or an appetite. All I am thinking is 'protein' - I need protein. Eggs, maybe. My taste buds are off and I don't feel hungry right now. I went into Nat's room and asked her to check on me from time to time. I am not sure what I am feeling but it scares me. Bones or uterus, the pain is excruciating. The rest of my body aches from moment to moment and I don't feel that I can function on any level. I went into my classroom online and completed the discussion but it's late. I am thinking that I am going to have to withdraw from school. If this is what I have to deal with every 3 weeks, I will never stand a chance in the classroom. I don't want to be mediocre in school.

I went into the master bathroom and started the bath - no plug. I went downstairs (it is painful making those steps!) and asked where the plug is. There isn't one. So, he is on his way to get one - I told him to pick up the 8 hour Claritin while he's out.

He's been downstairs in front of the T.V. all day. Nice. It is such a terribly sad and lonely place. I can pray to God and read the Bible for comfort but, to see that human doing nothing for you and not caring if you are okay or not - that is devastating. I have blogged about this and feel like I, probably, don't need to keep saying it. He hasn't changed and he isn't going to.  And, I guess my cancer has settled into the minds of those around me near and far. I don't want anyone to be consumed with my condition but, ask me how I am, once in a while. The phone is silent, no door bell rings, no text messages. Sigh.

This is the way it's going to be all through chemo? Should anyone question why I feel the burning need to work...well, this is it.

Neulasta and Two Days After the First Chemo

Neulasta Injection & Two Days After the First Chemo

 

The Neulasta shot was quick and painless. I thought It would be an IV but it is a small shot given in the arm. I was feeling some discomfort in my abdomen before going in this morning and that particular pain has gotten worse as the day progressed. Some aches from the Neulasta but nothing compared to the uterine/ovary shut-down. I was told, today, that I should take Claritin to help with the side effects of Neulasta. I can't find anything on the web that explains what Claritin helps. Okay, I see on this discussion thread at the Susan Korman site where Claritin helps with swelling and bone pain. I think I'll run to the store and get some. I am feeling pretty miserable.

 

Neulasta



 



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