SO FAR SO GOOD.. .

...HOLDING MY BREATH

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

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

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

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

Self discovery...can be painful.

THE ROCKY ROAD TO SELF EVALUATION

 

 

I missed two days of work this week; not because of pain or nausea, but, a rash on my face. The same rash that was on my forehead (still hasn't healed completely) and on my cheeks after the first round of chemo. But, this time, my cheeks became covered in raised red bumps that filled with pus and bled. My forehead became agitated, as well. The swelling and bleeding is painful but, most of all, I, really, look horrible. My hair is, still, thin but hanging on. I look like an 84 year-old man. So, here is where self evaluation/discovery enters the picture. I never thought of myself as vain, but, find that my appearance bothers me. I assume it bothers others, too. As if I was a raving beauty before cancer. I wasn't - I know that. But, appearance plays a role in how one is treated by others...I know that very well. When I was homeless/living in poverty I couldn't afford clothes and, therefore, the boys and I shopped at Goodwill. I wasn't dressed "to impress", ever. If given a choice, the man at the sales counter would wait on the well-dressed woman in heels before me. I'm not feeling sorry for myself - that was long time ago. It's an observation. So, here I am, with a compromised face and head. I'm still me but I am viewed differently - or am I? I started thinking about the kind of person I am because one of my VSO friends, Duke, sent me a text today that said "don't worry, you are a beautiful person!". So, I asked myself, am I a beautiful person? I know that before the cancer diagnosis I was angry, bitter, and resentful toward Joe and I am working on that every day. How am with other people? I have a natural tendency to be kind to everyone and to reach out to those that others might not. I don't hold grudges and I don't judge. But, and here's the big BUT, I let others influence that part of me. I will laugh along or say something snarky if it fits the conversation. I'm not comfortable with that part of me and I think it makes my appearance ugly - at least, to me. Why do I do it? I, honestly, don't think about people around me and what they are doing. It doesn't bother me. I suppose I invite criticism because I do befriend people that a majority find impossible to like. There is something in everyone - this goes back to my shipmate on the Iowa that I blogged about earlier. Everyone has something special within them. Appearances and first impressions are not, always, definitive. What else about me? I anger quickly behind the wheel of a car. The LA traffic drives me nuts!! I spend too much time being wounded because someone didn't think about my feelings before saying/doing something hurtful. I'll ask myself too many times why my feelings would be ignored? Do I invite people to trample my emotions? Is it something that I do that brings that on? People don't feel they have to consider me? I don't know. But, I witness others being considered all the time - what am I doing that discourages such behavior? I wonder if some of it is because people assume I'm okay without it; I won't be angry or feel slighted. Or, I just don't warrant the caring part in some people. That sucks. Earlier this evening I read the devotional for today and started crying. I asked God what was love on earth for? If He asks for us to devote our love to Him and to relish in His love for us above all others, then, why do we have the capacity to love? We are meant to love and be loved or it wouldn't be the all consuming emotion that it is. It is the most powerful emotion we have. Love can empower and destroy. What other emotion does it like love? So where's the love for me? Why don't I have someone that loves me above themselves - or, above others? Am I not worthy of such love? I can't say that I have never been loved, I have. But, not by one that endures. My children love me but, even that is removed by several degrees. I love them in a way that I would lay down my life for them. I love Joe in a way that I would give him a kidney if he needed it - without a doubt. I love easily. I fall in love all day long. I fall out of it, too, but, still - in love all day long.

 

I, suppose, I worry that my face will scare someone. I don't know how I would react if someone shrieked when they looked at me. I feel like the beast on beauty and the beast. Thankfully, that hasn't happened, yet. Instead, I was hugged by my coach today. He made a gesture about my face and hugged me. That was very sweet. I needed it, too. I spend time talking about my face. Everyone in my workspace knows I am in chemo and they assume the rash is from the treatment but, if a conversation presents itself I will mention it. This usually leads to a lot of questions about the chemo. I feel this is a great opportunity to explain what chemo is, how it works and why the side-effects are what they are. Awareness, awareness, awareness.

 

 

So, my appearance challenges me in that I worry what others think. I don't like the way I look but I don't have to look at myself if I don't want to. What others see when they look at me is my concern. Do they see a good person and did they see a good person before? How can I take this experience and make myself a better person? I'm figuring it out.

 

This is the rash before the last round of chemo. My hair is still like this.
My next round of chemo is in 7 days.

This is the rash after the second round of chemo before the rash on my cheeks
became raised, pustules followed by bleeding. I might post that picture later along with
the red burn-like mark on my breast (I am assuming its from the radiation).

 



Chemo; 4 days and a wake-up

Chemotherapy

4 days and a W.U.

 

 

I was scheduled to start chemo this past Wednesday but my post-op visit with Dr. Demanes changed that.

 

I saw Dr. Demanes last Tuesday and, although, I am healing nicely and show no complications the doctor felt that I needed another week for the wound to heal. It is an open wound that was the entry and exit point to the SAVI. It remains open to heal so the seeping can occur naturally. To my uneducated eye it looks fine; scabbing over, in fact. I didn't notice any redness or swelling, either. But, Dr. Demanes saw slight swelling and some redness. He called my medical oncologist and discussed his concerns with her and recommended another week before chemo. She (my substitute oncologist while Dr. Glaspy is out) agreed. I was a bit disappointed, at first. I don't know if Dr. Demanes could see that in my expression - I did my best to appear unmoved but he said to me "that's what you want from me, right" (or something like that) and I responded, "of course!". As he dressed my wound and told me what my follow-up plan would be I felt myself settle into this minor detour. I watched him move around and tape the gauze in place and I said to myself, trust him, he knows better than you what the consequences could be if chemo is started too soon - internal medicine, pioneer, knows what is best for you. After he hugged me good-bye I accepted God's plan in His time. Without asking what could this delay mean? Why? I said, it is what it is supposed to be and the answers will be revealed eventually. I was able to, completely, let it go and I did not become overwhelmed with worry about the effects of the delay on the progression of cancer. I let it go.

 

I returned to work on Monday. I arrived just as I did everyday before cancer. I wiped my desk and computer and tried to log in using my PIV card. My access code wasn't working and I tried so many time I was locked out. People trickled in and all were warm and welcoming. Seeing those closest to me in the workplace is a beautiful feeling. I have missed a handful of people achingly and others terribly and, still, others mildly. It is good medicine to be around people that care about me and, also, consider me the same employee I was before. Give me the work and trust me with more. Add, add, add and stretch me so thin I may snap. I am still the same person and don't need to be treated as if I can't handle the work I was doing before. My only issue is my stamina. I am extremely exhausted. By 0930 I am numb with exhaustion. I drink water and decaf green tea - Monday, I went for a walk through the park. Tuesday I walked to the Pierce Brothers Westwood cemetery. Wednesday I was too drained of energy to walk anywhere. My lunches have been oranges and Greek yogurt. I took home cooked chicken strips one day. My appetite is returning slowly...just in time for chemo. I have lost approximately 16 - 18 pounds since I first stepped foot in the UCLA Revlon Breast Cancer Center. I looked at food like the enemy. The items that are written up as being cancer fighters or super foods presented their own problems; I couldn't figure out how much I needed to eat to acquire all the benefits. I looked different places on the web and in books and couldn't get a solid answer. This caused a degree of anxiety so I rationalized that the less I put in my body the better. At some point I lost my appetite, altogether.

 

I found a daily devotional that was Adam's and I carry it with me every day. I don't always have time to read it but it is a comfort having it with me. I seem to have settled on this one over the others because of the connection to Adam. Ethel gave me one and Darlene gave me one but it is Adam's that means the most. They are all sending messages I need to hear and I keep them all near by but it is Adam's that is forever at my side. I polish my left ring finger with the cross and stone in remembrance of the sacrifice Jesus made for me. I chose the left ring finger because the blood line is closest and strongest to the heart. I can pass a finger over the cross and feel the bump of the stone at its center or I can close my hand and hold it in my palm throughout the day. I never want the image of Jesus far from me.

 

Joe and I went to Remedy pharmacy and spoke to Connie Kim about vitamins for me during chemo. She gave me a vitamin made from whole foods on a farm nearby. She also gave me D 5000 IU. Ethel told me to beware the vitamin D and I looked it up online and, sure enough, it is not a good idea to take vitamin D while on chemo. Chemo for breast cancer is prepared with the vitamin D deficiency in mind. It must be common that woman are D deficient when they have breast cancer. I checked for the other vitamins, as well, but all I found was that any supplement may interfere with the chemo. I put a call in to Dr. Glaspy to ask about taking the multi-vitamin and was told by the front desk person that he or his assistant would get back to me - that was Thursday afternoon and it is Friday evening. No phone call. I hope this is not a sign of things to come. If your oncologist isn't going to call you back then who?!

 

Marsue sent a book "Rockin' the Pink" and a coin purse. I need something to put my PIV and building Access card in and this will do nicely! It is wonderful to have my relationship on track with Marsue. Our communication has slowed and was minimal but now it is back to where it was.

 

I don't have an overly positive frame of mind today but I am not overwhelmed and defeated, either. I can't, honestly, say I am in a good place, emotionally, but I am not in a place of desperation. I look for answered prayers - and God knows I have been praying relentlessly for an answer in particular. I have had no indication that this one will be in my  favor. I have to trust and believe and let it go.

 

 

 

 

 

 

Adam's daily devotional.Natalia chose the 'Mint Green' nail polish and

 

                                                                    applied the first coat for me :)

 

IT COSTS HOW MUCH??

THE STRESS OF COST

 

I knew it was coming; at some point we were going to get smacked with a number that would stop us dead in our tracks. Of course, I get these calls because I am the patient - even though, I'm not the primary card holder for the insurance. I would rather not know how much anything cost  -  let Joe work it out with the insurance and co-pays, etc. The call came from the oncologist office in Porter Ranch. The receptionist told me the insurance has cleared everything except one thing, Neulasta. This is the injection that will enable me to go to work; it boosts white blood cell count to give my immune system a fighting chance to ward off germs from other people. $7,000 for each injection every three weeks. That is sobering. The receptionist said that she didn't have the word from the insurance company as to how much they are paying IF they are paying at all. She gave me a website, AMGEN First Step, to go look at just in case the insurance doesn't cover it or if we have a huge co-pay we can't manager. If we qualify AMGEN will cover the cost or co-pay. Joe kept bringing up the VA and getting the treatment from them and I was very resistant and told him I didn't want to get any care from the VA for my cancer! But, if there is going to be an issue getting this injection covered or paid for, I will call my provider at the VA and see if she will set me up to get it there. She has been very supportive and said to keep her updated in the event the insurance fell through at any point. I think it's best to meet with the VA oncologist and get everything ready to go if I need it. I know the rest of the bills are going to be tough, as well. We have only received two; one for all of the scans and imaging and one for Dr. Schmit. I covered the 400 dollar co-pay and left the 100 dollar one for Joe. I sure hope he paid it. (Note: I just asked him if he paid it and he said "No". This has happened over and over. That's why I went back to treatment at the VA! There were so many left over bills from treatment at UCLA that he said he would take care of and never did! I got calls from collection agencies and paid them with what I could our of my VA disability compensation check. Please don't do this again, JOE!).

 

The receptionist at pre-registration called and we went over a few administrative things for the procedure on Wednesday. She told me I had about 600 dollars of co-pay left and did I want to pay something on that now? After the co-pay is completely paid off then the insurance will cover 100 percent. I declined to pay anything. I have never been asked for co-pay money up front before.

 

If I work to solely pay co-pays - if every nickel I earn has to go to co-pays, its worth it and that is exactly what I will do.

 

I am almost finished with the saliva test for Dr. McCann - I can't wait to have some Green Tea!!!! Two days without and I am done with warm water and honey, warm water with lemon and just plain warm water! I hope the terrible head cold I have will not affect the outcome. I have done everything the doctor wanted me to do - now, it's his turn to take it and make me strong enough to endure chemo and radiation without being depleted or damaged. I am putting faith in Joe and Dr. McCann that God has moved us to him and will be working through him. I believe in this part of homeopathic medicine and really do not want to be disappointed - for me and for Joe's sake.

 

My mood has been more somber. Creeping into deep somber more every day. Any time my mind starts to wander about the future; going into the unknown and imagining all sorts of future events, I am snapped back to the here and now. Present and immediate future. This just saddens me. I have been a dreamer. Look far into the future and imagine different outcomes. I can't do that right now - maybe never again. All the calls involving money is distressing. I have to let it all go and trust in God that it will be okay.