Archive for March, 2012

“Accept—then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it…This will miraculously transform your whole life.” — Eckhart Tolle

March 30, 2012

You know those old commercials with the frying pan and egg and the announcer says, “this is your brain on drugs…” Well, I think I need to come up with a new commercial since I am definitely not diggin those anti-smoking campaigns. This one would be called this is your brain on cancer. The camera would zoom in shot of a woman doing her taxes and sitting in front of her screen, but getting up every second and sitting down not remembering what she was just typing into the spreadsheet. Okay, maybe that wouldn’t give the viewers a clear message. Really, all you need to do is look at Alex’s self portrait in a Picasso style with red on one side and green on the other. As he says, red is the anger and green is the hope. Of course, my self portrait would be more of an Jackson Pollock, but with Matisse cut out colors smeared across a canvas. Back to my brain on cancer and the commercial…it would clearly show several images of a woman on the phone asking why her chemo appointments were cancelled and not rescheduled, why was the drug she needed in shortage, and why don’t doctors call back unless she starts acting like she is ready to jump out the window. I confess that my brain on cancer is unlike any other and I lost my filter, my ability to hold back my tears, and my level of patience with people of minimal intelligence, motivation, and determination.

In my crazy weeks of my tumor marker rising for no understandable reason, I have had to face some not so special reality that is not my reality. I chose to ignore most pain and most of the facts that I do have cancer. It kept happening whether it was my son telling me that his friends were worried because I looked really sick, or the pain that caused me sleepless nights, or the calls from nurses who told me things I already knew, but did not want to hear. Yes, I do have cancer, but I found that during these weeks came some moments of pure joy. The happy tulips left at my door (who knew how happy tulips look!), the notes from old friends, the snacks or lunches with friends who really know me and see beyond the “hair” or the funny emails. Honestly, my sister always loves tulips and not just because she is married to a Dutch man, but now I know why! When they open and close, they are seriously some pure joy in a flower! To laugh about the everyday stuff is joy too and to see those 5th graders run, run, run for their PE test, that brought a lot of joy. There is so much joy around, you hardly have to look. So, when you are fixated on all your little stuff piling up around your house, just leave the piles and enjoy a moment with someone or by yourself.

I go to UCLA on Monday with all my lists and questions, but that is Monday. Right now, the sun is shining and there is much to enjoy besides folding the laundry.

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“On some positions, cowardice asks the question, is it expedient? And then expedience comes along and asks the question—is it politic? Vanity asks the question—is it popular? Conscience asks the question—is it right? There comes a time when one must take the position that is neither safe nor politic nor popular, but he must do it because conscience tells him it is right. –Martin Luther King Jr., “Remaining Awake Through a Great Revolution,” March 31, 1968

March 23, 2012

I have always had high expectations of myself and those who surround me, I expect nothing less. No one knows how the walk in my shoes feels every day. So, instead of telling me what you think I should do, start listening and respect how I live my life. I bet you don’t face your jewelry box and say to yourself, “I should give this to my niece or this to my son?” I bet when you are out on the ocean seeing a group of friends having a memorial for someone that you don’t think to yourself how would I like to celebrate my life. I bet when you hear statistics about your health, you don’t think about how old will my son be in 5 years? I bet you don’t think every week as I have a blood test that I hope my numbers are just good enough so I can be around those who I love. I bet when you are eating food you don’t have to really smell the food because this is the only way I can actually taste it. If by telling me to relax, you think that helps…well, it doesn’t. You have no idea what I go through on a daily basis and what my husband, son, and family deal with every day. This is because I try very hard to keep things as “normal” as I can for myself and my family. I don’t let the cancer define me, but it is me and it is my disease. My family lives with it every second of the day and it creeps into my sleep too and gives Alex nightmares and Jim sleepless nights. I do put most negative thoughts in the back of my mind, but reality exists and I often think how to make every aspect of my cancer easier for those who surround me. So, back to expectations… When I ask something of a friend, whether it is a ride for Alex or a smoothie for me, I just want to know the answer of “yes or no”. I do not have time for your excuses. Don’t waste my precious time. I don’t have time for your fear because there is no room to be a coward in your fight for your life. I give myself little room for excuses and do all that I can do every day. It is not that I don’t care about you; I don’t have the strength to hear excuses, negativity, or deal with cowards. This is not to say that I don’t want to hear about what is truly happening in your life with your family and children. This is what I want to hear! So, while I fight every day for my life and you may take yours for granted, please try to listen, be the best you can be, fight hard for what you believe in, accept nothing less than the best, and stop saying you are too busy to do this or that and make things happen. You have choices and you are in control of many aspects of your life. So, take control! There are no excuses as you have the power to make things happen whether it is going to the gym, making time for yourself, seeing an old friend, listening to music, dancing to music or whatever makes your heart beat strong. I know it is difficult to know what to say to someone who has cancer, but if you are struggling for the right words, do cancer patients a favor and say nothing. Just give a hug or smile. Don’t tell us what to do especially if it involves either not doing something, deep breathing, or relaxing. We will do what we want and how we want and live our lives how we want because you have no idea unless you have cancer or have had cancer. Even then, all cancer patients cannot be treated equally. We are all motivated differently in how we chose to live with our cancer. I choose to live with my cancer the same way I have always lived my life. Even then, I have made changes to how I approach each day. I have no time for EV (emotional vampires), no time for excuses, no time for those who think they know, and no energy for those who fear each day or sweat the small stuff. I have high expectations of my doctors and my team and they know it. You cannot imagine even in the slightest of how my son faces each day with courage and determination and my husband refuses to waste a single second of his day. They are my force that drives me. Your support is always appreciated, but you cannot understand unless you walk in my shoes every second. I put on a good show, a good face, have good hair, and you don’t even know the strength it takes to do this every day. Some of you do understand. Unless I am asking for relaxation techniques or breathing exercises, I don’t want to know what you think I should do. I am doing it. I am doing what I have to do. You should know that I do understand how difficult it is for you because it is that much harder for me. When I hurt, you hurt. I was going to give this list to a friend who has since passed away from cancer. This is the list of the top 7 things I almost laugh about being a cancer patient, but on some days I cannot laugh. It is not because it is not funny, but because I have to fight that much harder.

 

Here it is:

  1. From doctors (not on my team), “you are not making it easy because you are too peppy to know you are sick.”
  2. You don’t sound like someone who has cancer. (on the phone with insurance people)
  3. That’s not your real hair?  You are so lucky to have such great hair. (the luck is what sucks)
  4. I know someone who had cancer, she died.
  5. THE LOOK, the head tilt, deep breath, sigh, pause, the pity look
  6. Uh oh, Santa Ana winds, will my wig blow off my head?
  7. You know what you should do? (this statement I always got me hysterical before my cancer) Nope, I don’t know, but if you know I suggest that you do it for yourself.

 

From Vickie Girard, “When cancer patients voice a problem or concern, you are mistaken if you think we always want you to try to cheer us up. Or that we expect you to fix us. We don’t. Sometimes we just need to voice our frustration at the viciousness of this disease.”

“Raindrops keep fallin’ on my head, But that doesn’t mean my eyes will soon be turnin’ red, Cryin’s not for me, ‘Cause I’m never gonna stop the rain by complainin’, Because I’m free…” BJ Thomas

March 17, 2012

Okay, I am almost FREE! I did not include the next part of this song which is “nothin is worryin’ me” because we know that is absolutely false! I started this new chemo with my steroid “high”. Oh, I was the superstar who went to school wondering why I felt so great. It was the steroids “talkin”. Then, it all started. Why were my lymph nodes enlarged at the back of my head, neck, armpit, and groin? What was this horrible pain I was feeling? Hmmm, no nausea, but what is going on?? So, I started with the emails, texts, calls to all doctors, but no one thought it was that urgent. I completely forgot to add moans and groans and pretend that I was calling from the ER. If I was talking on the phone, I could obviously not need help. My old truth remains…if you are not bleeding from your eyes, you are FINE! So, I went to my VIP nurse line. I had little reassurance that this was a “normal” reaction, but what did I expect from my usual abnormal reactions to chemo.It all seemed to make sense to them and even more sense was their suggestion to take some pain pills. I refused until night time since I rather not drool on myself. At almost 8pm, my doctor phoned me to tell me that this was a normal response (although not at the top of the list) and it should get better soon. I kept looking for my orange/red urine every time, but nothing appeared. I kept waiting for the other symptoms to happen, but I was left with pain and more pain especially pain in strange areas!  I decided to stay in the bed and watch horrible Bravo TV with the millionaire matchmaker and other such fun shows. I had zero appetite (still trying to find an appetite), cried over my wig hair, cried over my annoyance with having such pain, and just frustration that this was lasting too many days.  Today, despite the clouds and drizzle, I had to take a walk! I needed air outside my house. I was feeling so happy to be out of the house. Of course, this was short lived as the afternoon started. By dinner time, my body was telling me to sleep and sleep without the eat and eat. My pain is less, but now my brain hurts trying to read my heart study that I had prior to starting this chemo. Translation please?!Where is the real language of “heart is broken or it is not broken or this part works fine”? My doctor sent me the report, so he must have not been too concerned. I know tomorrow will be better. Sunday will be the best-GO CLIPPERS!  So, it is supposed to rain all weekend?! I will be thrilled to exit my house, put on my rain boots and dance in the rain!

“What ifs” are natural parts of the cancer battle. We say it silently in our head and heart much more often than we say it aloud…Reality has been forced upon us-occasionally just let us share it openly with you.” Vickie Girard

March 13, 2012

Since I last had written anything, so much has happened.  I am still not sleeping all that great. I use my early morning hours to acknowledge my fears, tears, and prepare myself and my mind for the day. For the first time, I am afraid, but as always I shove that fear to the back of my mind and take things day by day. This fear has brought about my new “no filter phase” where I feel free to tell anyone what I really think and refuse to put up with the EV, Debby Downer, or general demanding rude people. This has caused some casualties, but I have no tolerance now for the petty, the self centered, the self absorbed, the narcissistic, and the one dimensional people.

Once I learned the new plan, I began my logistical nightmare. Thanks to Obama who allowed this silly drug shortage to stop and forced the FDA to import the drug that in the U.S. were not making because it is not profitable and rather have people not live than make a buck?! I had to first go to Hoag Irvine for a heart study which proved to be the only body part that is working great. The technician commented about my beautiful heart. Before this heart test, I did let loose in the office as a volunteer who decided to tell parents who demanded to interrupt the classroom that would they want me to stop the education of 31 other students for this important message to have “Sally” walk home with a friend? There were too many calls of this nature with, “teacher did not answer my email this morning” because I told the parent she is teaching your child! Some parents asked for my name which I gave freely since I am a volunteer. I also had a face to face encounter with a parent who wanted me to deliver a hot lunch instead of helping a student who fell on the playground and needed some ice?! Oh, yes the student really needed the hot lunch or else they may disappear into thin air? I did spend my other moments at school entertained by the laughter and questions of the 5th graders in computer lab. There is nothing like hearing their concerns and questions of a 5th graders problems to put things into perspective!(also give you a good smile) My doctor phoned to save the day to tell me that my heart looked great and they saw a loving and giving heart in the scan. Good to know my heart is labeled as loving and giving?!

Some doctors we see have so much to offer and then there are the occasional doctors who skimmed my records. So, I guess I can ignore a doctor who is trying to improve my reproductive health since I have no reproductive organs considering I have ovarian cancer?!  On the other side there are my doctors who are fully booked and trying to make the wheels turn except there are the blockades of logistics of insurance and office staff. They still haven’t quite figured out the chair to patient to infusion ratio. Maybe, I can give the problem to the 5th grade math class to figure out? I called to book my appointment for Friday only to be told they were “sold out” or “full”. My office staff friends admitted they would lose their job if they booked me, but because it is “me”, they would book me on Monday without having the proper chain of command. I figured they must have started the flat screen tv give away with each chemo infusion on Friday?! Seriously, again they don’t have room for emergencies…not even speaking about myself, but what about someone else? This isn’t about getting your nails done or standing room only to a Coldplay concert! They shuffled me around phone to phone as I asked what I could do to get the proper chain of command and guarantee me a spot for Monday. I learned that one person handles all 7 doctors insurance processing. How can this be? Alex’s pediatrician has 20 people who do this and they are not dealing with major medical issues! I also learned that I needed to get the CPT code and give it to my insurance, so they can get the right information. I had thought this was going to be an easy call. I was so wrong! Four hours later (no, I am not kidding), I had success. Of course, I had to have someone pick up Alex since it became a crisis. I was disconnected twice and passed to the wrong department over and over. I begged for a supervisor, but was told, “not to get huffy as they could help me”. When I was disconnected, I decided to go the made up foreign language route with a bunch of strange sounds, so I could get connected to a LIVE person! I finally did get a real real person who insisted that she would stay on the line until 9pm East coast time until we got the answers I needed. We both got disconnected together, so she could join in the fun. Of course, with the lovely HIPAA regulations, I had to insist she remain on the line. We finally got a person who said she just needed to talk to my doctor, so I gave her his number and DONE!  With this saga over, I wondered how the old, the really sick, and working people deal with this. I now see why our cancer death rates have not improved. This could be mostly due to people who just say, “I cannot spend one more hour on this” and just go back to the old drug that didn’t work or just get too depressed to even deal with it. This journey ceases to amaze me from the potential errors and insurance to the ongoing issues of managing your cancer job. Once I got this all booked including my chair with a view, I decided to maximize the next days with fun and more fun.

I managed to exhaust my family, but it was worth every minute. Alex counted our activities and said we did 7 things on the weekend. I told him it only partially makes up for all my weekends in bed. We went to Disneyland (picked up Alex early) and forced Jim to wear a birthday button even though his birthday is Weds. We did all the rides we wanted and met nice people in line everywhere we went. Then, we went to Roy’s in Anaheim to celebrate Jim’s pre birthday. On Saturday, Alex had to take his piano theory test for his certification, had an honor band concert, and I decided that the Pac 12 at the Staples center was too far of a drive. I decided to go with the Big West since Jim graduated from Long Beach and they were in the finals. Alex loved every minute of it. Just wait until the Clipper game on Sunday! Then, on Sunday we went whale watching with the Ocean Institute boat. We saw gray whales, white sided Pacific dolphins which we were told are very rare, and an incredible display of more than 300 common dolphins having a feeding frenzy. They were jumping and riding the waves and swimming with the boat. The weather was cold, but sunny. The ocean air felt amazing. There was one of their tall ships out on the sea doing a memorial service. I looked at Jim and he said, ” don’t give me that look.” Instead, I enjoyed the show of the dolphins, Alex’s smiling face, and Jim’s blue eyes matching the color of the ocean. I thought and felt for just these days that I was a mom, wife, woman without cancer.

Of course, skip to yesterday and the reality hit like a ton of bricks. I started my new drug after re-doing the entire chemo order based on what I have done over the past 2 years with pre meds like steroids. I cannot take that much or I am high as a kite for a day without sleep. I was thrilled to see the couple who we met so long ago. The wife has an incredible spirit and attitude. She reported that we were in trouble for laughing. I asked her if we were going to get kicked out. I guess it would be better to join in the moaning, whining, groaning of the rest of the closet visitors. My pod was bugging me. The smells were too much to handle. Lucky for my husband the engineer, he fixed it so I wouldn’t see the tubing or smell the chemicals. One nurse told us she just became a mouth breather ever since she became an oncology nurse. It really stinks of chemicals. They walk around in their hazmat suits while we just get the junk poured in our veins with our spouses and friends exposed to all the fumes. There were some really bad looking patients in the cancer sense. I put my head down and watched TV on my ipad which I proceeded to drop on the floor. “Save the ipad,” I cried. My case saved it! Then, the husband of the couple we like told me to turn off my interrogation light which may help too…I asked him where my air control is like the airplanes have?? He is a pilot and thought it would be a good idea, but commented that whoever designed this place (although new and modern) never had a family member with cancer. So, they brought me the Kool Aid (seriously, it looked like orange/pink Kool Aid or rum punch without the rum!). They informed me of all the fun side effects like hand and foot syndrome (blistering of the hands and feet) which is a common effect among the normal ones that I have experienced. For whatever reason, my blood counts had dropped a lot again. I started grabbing my face to which Jim asked, “why are you doing that?” I told him that inside my mouth was burning including my tongue, so they slowed the infusion down. Overall, I won’t comment too much so I won’t jinx myself, but I am dizzy, dizzier than dizzy and high on steroids with little sleep (up at 3am). I have the usual issues, but who is counting. Instead, I will look forward to some sleep and taking it hour by hour. I have to thank my rockstar husband once again for always thinking of me first and thank him for his honesty, comfort, and drive to always find the next plan is something that makes me feel like the luckiest wife in the world! NO, I am not talking about his driving even though we joke that he is only the driver!

My comment for the day is to be kind to EVERYONE!

“Kindness is a language which the deaf can hear and the blind can see” ~Mark Twain

 

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me! ” Dr Seuss

March 6, 2012

I am wiped out, but thought I would share some of the highlights of my field trip to UCLA. Luckily, there was not a lot of traffic which made the drive so much more enjoyable. We started with the “who’s on first routine” with my blood test. It was a comedy or at least I thought it was. So, we should give the shot before the blood test…hmmm, don’t we want to know what the number is? Should we send to the lab or do it in this machine that takes 5 minutes? Should we heat the shot to it is boiling or just let it sit iced?  After a couple of pages to the doctor, success! GUESS what? I didn’t look as bad or sound as bad as the numbers showed. Oh, I forgot to jog a bit, so I could really look out of breath. I really have to stop smiling! I will quote some of my “fans”. “I would have bet your number was higher based on how you are acting”. I also would have bet based on my behavior that I don’t have cancer, but I do! Then, off for the next tests. All I can say is I am glad I know my body. I also am glad I do have a doctor (doctors) who hear what I say. After a good audience for my ultrasound which took so long after all audience members could take a peak, my leg started having a spasm! People are we done yet? So, my lymph nodes are on “fire”, but no biopsy necessary. The cancer cells are travelling around on their own field trip and the key is to end this field trip before they form a party at one of my organs! After much discussion  and much hugs, hand holding, (yes,from my doctor!), he said it is time to change the chemo. Of course, my only question was, “weekly”. Both drug options are once every 3 weeks and by IV. Much more to tell, but still waiting for my latest tumor marker test. Yes, my doctor told me to call him on his cell phone throughout the day to have him check to see if the number was posted and yes, he called me to let me know it wasn’t posted and then said, “sending you hugs and know that we will do this and don’t worry, one day at a time!”. Tonight, I will still dream of my salted caramel chocolate tart.

Gotta love the sunshine! Freedom!

March 5, 2012

We had the best day yesterday! The drive down to San Diego was beautiful even though I was trying to get the images of Scripps out of my mind! We started with lunch at the Prado in Balboa Park for our favorite flatbreads with yummy spread of who knows what. Jim said it was spicy, but I could not taste the spice. Then, we were off to get our tickets to the Black Hole Imax. I got to say that Rock the Dome looked more my speed, but I was out voted. After seeing the film narrated by Liam Neeson, I have to say that I learned something new! Plus, we did get to see the preview of Rock the Dome. Again, if you listened to Pink Floyd or old fashioned classic rock, this looks like a fun show. Alex did not know the songs, but said we have to see the show next time. Then, we went to the Titanic exhibit at the Natural History museum. This was definitely overpriced, but interesting to see all those artifacts. Alex has loved the Titanic since 2nd grade and has read so many books that he liked it (but said it was a rip off and should have been longer). At the start of the tour, they give you a boarding card with your name. I told the guy that he better picked me a winner. Just not in the mood to die on the Titanic today. Thank goodness I was a first class passenger traveling with my daughter. Jim was from Akron, Ohio which we thought was strange since I lived in Canton just around the corner from Akron. After that exhibit, we saw the skulls exhibit which was more interesting than I thought it would be. Then, we were off to La Jolla. Unfortunately, I forgot to make dinner reservations, so we were out of luck for our favorite restaurant. The handy dandy handicap placard came in handy for parking in La Jolla. We saw the seals and seal lions. La Jolla is so beautiful. Then, we did the Yelp trick with the monocle walking down the street trying to find a place to eat. We found Whisknladdle which I have to say is now my new favorite. Not only for the salted caramel chocolate tart and homemade churned ice creams, but loved my entree. Alex ate an entire beet, goat cheese salad. Then, we were back home in a flash. I had some not so special moments being out of breath when my voice became hoarse. As soon as I sat down, it disappeared. I just had to have my weekend of freedom! Of course, there were other stomach calamities, but hey it was worth every bite!

Tomorrow is tomorrow. I am trying not to think too much about UCLA. I will be going building to building having my tests done and hoping that a shot will be enough. I do not want a blood transfusion at UCLA. We’ll see what the plan is and go from there. Until then, I will have some days of freedom! Hoping to get to the Pac 12…but who knows! I feel terrible that I will miss Alex’s Walk thru the Revolution, but have my friends taking photos and videos. I know he will feel the love! Hmmm, just wondering where the handicap parking is at UCLA…

CANCER SUCKS…BUT hey I got a handicap placard!

March 2, 2012

What a exhausting day! I was so high on life with my new found freedom which I had for about 4 hours that I almost felt a tiny bit “normal”. We were treated like VIPs at the hospital and were escorted around (just needed a cocktail and some music playing to complete my relaxing scene). They pulled the lab technician from the hospital to do my blood draw and held the driver so it could be processed fast. It sure was fast. Unfortunately, my regular blood numbers were not so pretty. I was given a choice of trying a shot and then if it doesn’t work then transfusion. I picked door number 1, but unfortunately due to insurance logistics who knows if I will get the shot. Most likely, I will get a transfusion before I get the damn shot!

So, this current chemo may be working but not working that great…who knows. We need a new plan and we will meet with the doctors at UCLA Monday for the next plan. On a positive note, we WILL have a free weekend of no chemo side effects…the first in 8 weeks. One day at a time!

Sun, sun, here it comes….

March 1, 2012

Day 2 of my freedom: things are working out much better than day 1! Day 1 was a field trip to Walgreens that felt like I ran a marathon from the entrance of the store to the “mile” long walk to the pharmacy. This was followed by a trip to Trader Joe’s for a couple of items. Luckily, I looked like I was visiting from another planet or was in a constant state of confusion as if I never went to Trader Joe’s. My field trip was met by the lovely “guides” at Trader Joe’s who escorted me through the store while I looked at my Evernote  shopping list repeating to them the 4 items I needed.  Success! Something new started developing with my first day of freedom-an appetite! So, since I had been awake since 4am, I was ready for lunch at 10am. Unfortunately, since my handicap application was returned for my big money of $6 which I forgot to send, I decided to make the adventure to school early based on my marathon to the pharmacy at Walgreens. Who knew how much that temporary handicap card was needed?! Of course, with a little help from my friends, Alex managed to get to his after school activities while I was back to bed for a nap after my big field trip. Day 1 was also spent organizing my next adventure for my blood work tomorrow.

So, besides my new appetite, I still am chemo-i-fied! It will wear off soon (I am hoping)! One really exciting news is due to my husband the rock star as fake doctor read about a new protocol which adds a normal drug used for diabetics for cancer patients. After some reaching out towards our team of doctors, it seems to be something to try and with no (or should I say no toxic ) side effects. So, that is something to look forward to…more drugs! Honestly, if you would have asked me at day 4 of the chemo pill process, could I do this again…I may have told you absolutely, “no”. Every day I woke up, I kept saying, “thank you out loud and only 3 more days or only 2 more days…” It definitely was a different type of experience. I was so drugged that I am certainly glad that I kept away from the online shopping experience.  I still wonder how my friend does these pills and IV chemo! You got to do what you got to do.

My Day 2 was a bit more eventful with a visit to the physical therapist since I still have the damn neck injury. I was happy to know that my joints are finally healing…now to the muscles. So, since I was hungry and decided to eat lunch, I missed my window for getting a parking space. Instead, I watched all the not so handicap people walk from their cars, others parked in staff spots, and others just park their car in the middle of the parking lot for fun. I kept saying to everyone who knew me, “just wait until I get my handicap card for my car, I will be doing a dance from my car door to the school entrance!”. I walked a bit without too much issue and even tried to pick up the pace to see if I would be out of breath ( a sign that my red count is low, low, low), but it didn’t seem so bad. All will be revealed tomorrow when I get my blood test. To pill or to IV, that is the question or should I say, to “shot” or to transfuse that is the other question. Jim will be escorting me even though I was told that I will get a personal escort. Not sure if they meant security?

There is something to be said about the 1st weekend since Jan that I will not have chemo! There is also something to be said about fresh air, blue skies, and sunshine! I am sure happy to be enjoying my freedom. I hope you are too…don’t take it for granted.