Archive for May, 2011

“I walked across an empty land. I knew the pathway like the back of my hand. I felt the earth beneath my feet, sat by the river and it made me complete.” Keane

May 28, 2011

My forecast today is partly cloudy with a chance of thunderstorms later this afternoon. My new discovery was the lovely cough caused by acid reflux. Who knew that would happen too?

The visit to the chemo matrix was a very long, long, long, day, BUT the treats of brownies, cookies, and incredible cupcakes lifted the whole mood of the podville! After reviewing the new plan with my doctor, I was in a better frame of mind due to NO steroids! I think I am still feeling the last week steroids-TOO MUCH! Next time, I will get 1/2 as much which is a fabulous idea. Plus, hope to gain control of this nausea. Since I had the meeting with my doctor in the ole’ stinky closet, I had to spread the wealth of the treats which brought so much sunshine to that stinky closet! Off to the matrix, I announced to my doctor that I would take any nurse except the one that yelled across the room last time that the slow drip doesn’t matter and flush doesn’t matter. No thank you! After having my weight taken, only down a pound, the nurse noticed my trick. “Hey, you are wearing jeans and a lot of clothing, you cannot fool me!” So, I tried my trick, but it failed. Overall, they were happy that I did not lose too much weight, but I have to focus on eating anything and everything I can. The atmosphere of the matrix was filled with the grey bald sad faced women who looked like the pod sucked every hope from them. I focused on my treats and started to hand them out like Oprah does to her audience saying, “you win and you win”. Only it wasn’t a trip t Australia or a new car, it was brownies, beautiful flower cupcakes, and cookies. Well, they acted like I was giving them a trip to Maui! Gradually, the grey bald sad faced women started to grin. How can you not smile if you saw these marshmallow petal flower cupcakes? Of course, they joked that I made them, but I told them I have great friends who are very talented and wanted to thank them for all they do for me. Nurses from the stinky closet were coming by and nurses were coming out of nowhere to talk about the treats. It is amazing how a small gesture can go such a long way.

I picked my favorite pod almost close enough to the bathroom and with a great view of tree tops! While waiting for blood to be taken, the older couple next to me was screaming back and forth with misunderstandings on both sides. We heard something similar in Jamaica once when an older man was yelling at his wife, “did you put the breakfast order in?” and she responded, “it is 8 o’clock”. It was like this for a while, but the discussion was focused on the drugs and the time, but responded with “are you hungry”. Unfortunately, her next comment was, “I peed in my pants”. I did not know what to do, but she resolved the situation by wrapping a blanket around herself and decided that was good enough.  I told Jim to remind me to not sit at that pod! My blood was taken and results of only the WBC and RBC came back which both SUCKED! It was too much of a jump for one week, but the WBC would be resolved with the lovely neulasta shot. I decided that if I need a transfusion, it is fine and should not worry that they would give me cow blood by mistake. They took the tumor marker, but I had to do a special handshake to promise that whatever the number is that I need to try 2 cycles of this combination to see if it will work. I did the shake, plus a little dance with my IV and agreed.

I was excited to see my cousin Margie and her sister, Cindy who helped passed the time by some good ole’ ipad apps recommendations and demonstration.  I also proceeded to have a continual bloody nose while getting my infusion. Damn those platelets! Also, damn those nose hairs, first to come, first to leave! Welcome to the dry skin phase!  After they left and Jim came back, I did chat with a woman who has breast cancer and was very funny. She explained her medical situation and then, my cloudiness started. I told Jim she had breast cancer metastasized in her scrotum. Jim said she did not look like Chaz Bono, so am I confused? Of course, I did not realize that I said scrotum. Who knows what I thought I said?! This is always entertaining like menstruation instead of administration or defecation instead of defamation. We left just in time for the 5pm traffic. It was so bad that it took over 3 hours to get home. I had passed out for part of it, so poor Jim had to deal with it!

Yesterday, I did the sleeping beauty routine or what I now call the old lady syndrome which you fall asleep in mid sentence anyplace, any time, sitting up or reclining. I did make it to Alex’s school for pick up, but I hid in the office not wanting any emotional vampires to suck anything from me including my blood! Then, back home to the VIP insurance calls checking on me to see if I was ready to jump out the window. I told the woman that I was looking forward to a cool summer without much hair and no shaving the legs!  She determined I was not needing any further escalation. Then, the nurse called to check on my status. She was helpful with her explanations, but it required too much energy and effort to show her that I needed this new treatment plus all the anti nausea meds etc….I finally finished that call with a doze off for 20 minutes.

Today, as I said partly cloudy with a chance of storms. I must go to the sleep zone again. I feel all the sunshine from all of you with your cards, texts, emails, treats, and virtual hugs! Have a lovely weekend! I hope to emerge out of the fog and start my weeks of FREEDOM!

 

“The force is an energy field created by all living things, it surrounds us, it penetrates us, it binds the galaxy together” – Obi-Wan to Luke

May 26, 2011

“The Force will be with you, always” – Obi-Wan to Luke

Oh yes, I have “the Force” and somehow turned a corner just in time for tomorrow. My doctor phoned after I sent him an email of my symptoms and ever present nausea. He apologized and said that we will meet tomorrow to come up with a better plan. I am ready for a new plan. Of course, I needed more anti nausea drugs. In my home pharmacy, I was out…completely out of my key ingredients for the recipe of keeping the nausea under some control. Easy was the refill, difficult was the over $500 charge for 3 pills since my insurance would only cover these meds once a month. Since the “force” was with me countering all negative force fields, I was empowered to pick up the phone and give the insurance a piece of my mind. After the lovely voice recognition, I began repeating, “representative, representative, *$&#*$&*# representative” and I was connected. I had the same tone and determination that I had last week at the book fair standing up against censorship! Sally heard my voice loud and clear as I told her that I would end up in the hospital for a week from dehydration and vomiting and is this cost effective for insurance?  I have cancer, stage IV (now the number comes in handy) and I am in the fight for my life and need these pills. Of course, when needed I can dramatize better than anyone well with the exception of some fine acting skills by my sister and cousin who actually could make a living by acting instead of my fake comedy routines. No sooner did I make a demand for an override, Sally placed me on hold. She returned to tell me (despite her first claim that there was no one on the East coast to help me and all supervisors were gone-hey, what about the West coast people) that the override was done.  Sally ended the call saying she wished me all the best, and could tell from my voice that I was a survivor already and had the strength to fight cancer.  Then, she told me, “I am a survivor too, 11 years, stage IV”! Wow, don’t be messin’ with me negative force fields! The energy field covers coast to coast! I got my meds fully covered. I even managed to eat some dinner too! So, as the sun is setting, I may have a cloudy moment, but I sure do feel the love and positive energy from all of you! Back to my Lady Gaga pod tomorrow and I know with all my homemade treats, the nurses will be so happy! I am already smiling!

“We are stronger than we think we are. We have courage that we do not recognize until we need it. We are equal to challenges that we haven’t even imagined yet.” Peter Buffett

May 25, 2011

I am beginning to see the light except the harsh reality of the nature of people continues to shock me. I am constantly overwhelmed by the emails, cards, food, snacks, calls, and conversation by those who continue to support me to win this race. I am also continually surprised and disappointed by those who do not fully understand my race to win. It goes back to a conversation I had with Alex’s first grade team of teachers. When I was baffled at the behavior of some parents, they explained to me the truth of some of these unusual parents. These  people are like no others I have met along the cities I lived or even countries I lived. A very unusual “breed” of people who are so self involved, self absorbed, and narcissistic. Could there be something in the water here that causes a narcissistic personality disorder?  Jim reminds me also that no one really understands what I am going through. He reminds me it is difficult to fully understand unless you are living “it”.

I have learned so much about people in this cancer journey. Many are afraid and many are just plain ole strange! I am surrounded by so much love that keeps me going, but reminded by those few who are going against my current pace. I always expect the same energy to come back that I am putting out. Believe me, it requires a lot of energy and strength to keep my “force”, but I am determined because of all of you. My Dad always told me to treat people how you want to be treated, but then why are there some strange oddities along the way who try to zap my positivity? I refuse to let these people have the power and chase me away. My recent encounters with the people of NPD (Narcissistic Personality Disorders) continues to puzzle me. I definitely cannot solve this one and I am all about fixing, so maybe this is what bothers me.

I have also learned to ask for help more often, but my brain is so clouded these days. So, if I am asking for something…remember this new self is a new me (my old self would love to hear the story as to why you can or cannot help me), but I now need just a simple “yes” or “no”. I appreciate everyone who has helped me, but my brain cannot process the details. I am hoping in my off weeks that I will be more like myself. I do apologize because I usually love to hear all the details of stories that are NOT cancer involved and focused on what drugs to take or not take!

The air is clear and I need to get some oxygen. So, I think I will walk to the park. Listening to the water from my fountain and hearing the birds sing reminds me that there is something so much bigger than myself. I know I have the power to fight this fight. Most importantly, I feel all your love and support and that gives me even more power.

“All side effects are temporary, but wellness is something we should plan on keeping for a long time. ” Vickie Girard

May 24, 2011

This will pass or I keep telling myself. Yesterday, new state of Sleeping Beauty was something I was almost enjoying.  I would press play and watch the many shows that Jim recorded for me. Of course, my last year show favorite was happening again, Australian Master Chef. I love hearing the language and the simplicity of Australian greetings, “how goes it?” is one of my favorites.  In and out, I was sleeping the aches and pains away until I was shocked awake not by the Prince, but by a wave of nausea so fierce that I started moaning and groaning uncontrollably. Looking back, I could have done some ancient chanting which would have sounded better than the moans and groans. Jim started a bath, put the music on for me, and grabbed the anti-nausea patch. Who knew that this patch was made for a giant man arm! We hardly knew how to place this on my arm which seemed like a strange puzzle, so Jim wrapped it around.  I know Jim was whispering something to me, but I could hardly focus. Again, I have vomit phobia. Out of the bath, I assumed the fetal position and listened to my Ludovico Einaudi song which reminds me of running a race and having the strength to finish the race.  After what seemed like hours (only 20 minutes), the meds kicked in. It is funny how we block this badness out from our memory like child birth.

Unfortunately, all these anti-nausea meds cause constipation, so I will be imploding in a few days, but better that than throwing up! All seemed in control when Alex got home, but he told me that my voice sounded weak. He quickly moved to his next priority which is his Operation Paperback. I will find my groove again.  Now that I remember that feeling of nausea, I am taking the anti-nausea meds regularly. I have no idea why I am thinking of strange food combinations like pickles and rice krispy treats. Yes, I know that raw veggies have no smell, but carrots and celery have no appeal. Ginger Ale is my best friend now and my taste buds are even more messed up than before this mess started.   I will give into the rest my body needs. I will sleep again, but at least my Prince, Jim will be waking me for lunch.

Lady Gaga influenced extreme makeover closet edition 2011

May 22, 2011

On Thursday, Jim and I entered the new waiting area of the extreme makeover and were pleasantly surprised. We were greeted with dark brown warm wood panel walls and other earth tones, plus it was nice and bright. While waiting for our pick in the lottery of nurses, we came up with a plan A and plan B. Unfortunately, the plan D walked into the waiting area. I kept chanting, “not me, not me, not me”. Yes, it worked. The door opened to my Plan A! Jim and I gathered the goods to “move into” my new space. I was so happy to see the brightness of the room, but curious about the new Sci Fi design which offered individual beige egg shaped pods (influenced by Lady Gaga?) to each patient.  This appeared to be similar to Howie’s Game Shack, but without the neon lights. I was starting to dig my pod which came with adjustable lighting, a warm blanket, and a nice NEW reclining chair. Even the IV machines were now hi-tech and they weighed less than 100 lbs! You could really roll around this new matrix of pods. Next came the strolling snack cart…the patients were so excited about not walking behind the nurses station to risk becoming “unplugged” for a bag of pretzels.  Then, the best thing of all-MEN and WOMEN toilets!!! Yipee!  The bathroon color choice was interesting with small square green tiles, but I will take it. Back to my pod, I was enjoying my incubation in my pod when my nurse asked about my new medication. Oops, wrong medication! Just a small glitch in the computer system. Again, I remind you all to pay attention to the details with your medical care. This all was sorted out, but we had to wait for the doctor which delayed the process.   In the pod area, you can only have one chair and if you push the chair outside the boundaries of the pod, you will be in violation.  We had a slight violation, but then I did one of my quick thinking long stories with a few key names. I convinced Jim and Margie that the story wasn’t a story. We were in the clear for 2 chairs in the pod as long as we stayed within the boundaries.

The infusion seemed to be going and going until the flush time came. Another nurse asked my nurse if the flush was okay. Plan D screamed that it doesn’t matter while I screamed it certainly does as I don’t feel like having a heart attack today. All in all, besides some burning which is normal and the length of the infusion which was too long, I can honestly say that the change in environment from the chemo closet to the chemo matrix was a breath of fresh air. My day ended with the tumor marker test coming back 40% higher, so I was reminded that I made the right decision to go with the big guns.

Now, Saturday came and went. It is strange how the mind blocks out the experiences that we don’t want to remember. I slept off and on all day on Saturday. The nausea was held at bay with the series of drugs I took. My aches and pains were familiar. This strange feeling of my body consumed by medication brought me that fog that I dislike so much. I am reminded that I am a cancer patient being treated to rid my body of this cancer. That really sucked! My boys did not like seeing me like this and I did not like feeling like this. I know this will pass as it usually does. I will have a new routine now.  I remind myself to not look at what I used to do, but what I can do today.

“So, keep wearing the armor of hope, my friends…” Vickie Girard

May 19, 2011

I am wearing my armor! Hope still is within me despite my daily encounter of a vigilante at the book fair who is fiercely against boogers, Captain Underpants, Diary of Wimpy Kid, Graphic Classic Novels (Black Beauty in cartoon form for low level readers, these were a defamation to the original books), and finally page 165 (I am not kidding) of an adult book on the adult table. My fearless friends who protected me, I applaud you and thank you. The parent had to recite page 165 in front of the few children (ours) who remained in the book fair. What is next? Chicken breasts, thighs, and legs (stole this from a teacher’s comment)? This was too good not to share for your entertainment. I did explain the purpose of those books and removed the adult book. I know the parent will return tomorrow especially since I will not be there and the parent may lurk in the bushes and wait for me on Friday. I am so happy to being living in my new car, I mean driving my new hybrid. Yes, some of you know I could not open the trunk to get Alex’s racket out for tennis. I did notice I could hide in there since there is an emergency release button.

All in all, I am as ready as I can be until Margie pointed out that we don’t even know where the new closet is! I will be wearing my combat gear and thanks to all you wonderful people, bringing a nice tray of sweet treats to celebrate the grand opening of the closet. I love you all and know that every hug, every email, every call, every look, every comment helps me to get through the long day tomorrow and helps me every day! You are all wonderful and special to me!  I am going to kick some cancer BUTT!

“Cancer teaches us that living is a verb. It is an action word. Living is seeing, doing, feeling, saying, touching, smelling, tasting. IT is climbing and it occasionally falling. It is not a waiting word. Don’t wait to live until you have accomplished a desired otucome. Starting right now, grab every minute of living out of each and every day. If you do, you’ll soon realize that every day well lived is like a miniature lifetime.” Vickie Girard

May 17, 2011

Yes, the phone rang at 8pm, just when I was trying to say good night to Alex. These doctors do know I have a child, right?  I guess they have not met my little man, analysis paralysis man child. Last night, he was doing conversions from liters to gallons, meters to miles, reciting mean, mode, and other fun math vocab since his math Star test is today. I try to stop this speech with talk of tennis, sports, school fun, but somehow he goes back to his count of books for his operation paperback project. Stop this math talk! So, instead of re-focusing and listening to peaceful music, I traded with Jim to answer the phone. My doctor is here for me and here to save my life, but couldn’t this wait until 9pm when either I am too tired to  listen and Alex is asleep. Okay, I cannot be so demanding. Instead, he recited my list of drugs (I felt like I was making a drug deal) and the plan of going for treatment back to back weeks. So, two weeks on, two weeks off. On a positive note, I can see my cousin more often and I have confirmation from a patient friend that the closet was moved and upgraded. She did not seem overwhelmed by the newness, so I am lowering my expectations to a clean bathroom and new chairs. I guess I should just expect a clean bathroom.

On a side note, today I left a delightful message for the accounting department at UCLA who decided to let a new employee make multiple journal entries on my statement. Instead of the abridged version, I now have the Harry Potter double version of my statement which looks like someone needs a little training in credits and debits. I had to reconcile this to my insurance statement and they made some major mistakes. I decided to entertain myself and leave a delightful voice message in accounting speak, so that they either think I am a chemo patient on heavy duty drugs or think I am crazy! I doubt it would provide some entertainment. Having been a VP of Finance with a department full of people, they all thought I was crazy and did not enjoy my sense of humor or comments that did not add up.

It is rainy today, but I still can see the sunshine! Hope you find the sunshine in your day.

Bye bye Miss American Pie, drove my Volvo to the dealer…and left with a Ford Fusion Hybrid!

May 16, 2011

Our beloved Volvo is no longer with us. She is now retired and we are hoping she is providing some teenager a safe vehicle for 20,ooo more miles. We are now in our hybrid sanctuary of the Ford Fusion. Silence. Music. No more whistling. Our Volvo hummed a happy tune announcing it’s arrival or departure. Now, we had to have our 4Runner sleep outside so that the hybrid could rest in peace. It was a very long Saturday with us leaving the dealer as they were refusing to agree to our price which was only a small difference. Of course, they called us back and 3 hours later, we left with the car.

On my cancer nesting job, get ready for the “baby” or should I say “babies” of pharmaceuticals, I cleaned out my bathroom cabinets and other areas of the house that I created piles of things for myself to review at some moment in time. All was very successful and even more joyful was the arrival of my pharmaceuticals ranging from $300 a pill, $1200 a patch, and the grand baby of $5,000 for a shot which I left at the pharmacy until next week. Wow, I am glad we met our deductible with our first dose of treatment in January. Unfortunately, I am without direction which I should receive tomorrow on all these patches, pills, and potions. I feel like I could wrap myself in a body patch and be good for Thursday, but how will I look cute for the closet (especially the new improved extreme makeover closet 2011 edition)?  With all this excitement, I forgot to tell you that I received a release form from the Dr. Oz show since they are doing an Ovarian cancer show. I wrote something or sent a photo or who knows what?! If I hear anything more, I will let you know or if you see anything, let me know. I also was invited to a seminar on Thursday, but no can do. The seminar was on integrative medicine and the role in cancer. Since I am more alternative exceptional integrative ( my new brand of medicine), I don’t know what I would have said anyway…maybe next year?

We started our weekend with Alex at Howie’s crack shack, I mean Game Shack. That place is crazy with grown men doing Dance Revolution and zombie looking boys with headsets staring at screens with hard drives suspended with bright blue wires like a sci fi film. Alex loved every minute of it. So much that these boys barely stopped to eat a donut? Then, Jim and I had an emotional dinner which we both realized the reality SUCKS since we had a moment of peace by ourselves. Of course, there was the emotional departure of our Volvo and arrival of our hybrid. We ended with a walk at Salt Creek and witnessing a military display for Armed forces day/weekend?! Alex is very focused on that as he is still searching the house for paperback books he can donate. We keep telling him that no soldier wants to read a Cisco technology manual or read about cancer! So, off to dream about the new improved closet. It will be very interesting to see what $1M buys you in chemo treatment facilities.

“With the past I have nothing to do; nor with the future. I live now.” — Ralph Waldo Emerson

May 13, 2011

Days have been more difficult than I thought, but really trying to stay strong for so many reasons.  Only had a few moments of break down, but was able to focus on other things like getting milk at the store and more toilet paper! Going to try to get some things done before I fall asleep at the computer.

It is official…I am a freak and extremely popular!

May 12, 2011

I was getting emails and calls today from doctors-o-rama. It seems a new report came out and it is official, “unique” tumor cells. I am still waiting for the Joanie gene to be mapped and cloned, but there may be a delay with that process as the clone needs to be without cancer. This cancer job is full time with NO benefits except massive amounts of drugs, most of which make you ill and few make you sleep. (Although I am still thinking about the sprinkling of some in tea or on yogurt as a topping) So, another meeting will happen on Friday, but there will be a definite new chemo combination drug (because 2 are better than 1) starting next Thursday. So help me, if they are not upgraded to the room and I am packed in the room like a sardine and it smells like a sardine, I may completely lose it. The nurses threatened to weigh me naked if I kept losing weight and I may strip down to nakedness if I am presented with a broken chair and some stinky people.

Moving to a better topic, Alex has an article in the Aliso Viejo Patch and it is so funny. I laughed at the interview as I can hear his voice. His teachers sent me a bunch of emails saying I need to keep for his college. College??? We aren’t even done with elementary school.

Off to sleep and a walk to school in the morning!