Archive for September, 2013

20 ways to living with cancer

September 27, 2013

I decided  decided to post my strategy and lessons learned from my ongoing treatment (chemo non stop) from 2010 to now.

1. Be your own advocate: BYOA
2 mistakes happen so try to avoid them!
3. Take control of your treatment: TCT!
4. Average dosage based on 200lb man, your dosage may be different
5. Sometimes there are no answers
6. Living with the unknown, it is what it is…
7 It’s okay to visit the island of negativity, but make sure it is a short flight
8. There is always someone sicker than you, dying today, yelling for your doctors attention, so choose to be demanding at the right time
9. Nurses are the best source of info
10. Ask questions, don’t be afraid
11. Ask for help, to friends, neighbors, co workers,
12. For you to succeed, you can’t do this alone, this journey requires you to get help, ASK, ASK, and ASK
13. Take notes and have someone else present at every doc meeting, each person hears different things.
14. Eat and drink , whatever, whenever, your body needs fluids and nutrition to fight the cancer
15. Seek out 2nd , 3rd , 4th opinion, you can learn something from every doc. Never stop asking
16. use your time wisely and save your energy for what is important to you.
17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope

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The road less traveled

September 25, 2013
Each weekly chemo, I am forced to face the “end zone” of this disease. I am faced with the horrible way the once healthy bodies decay both in mind and body. A cancer friend asked me the other day, “why can’t they find something less toxic on our body and why is this disease so horrible”. Despite the goal to survive with dignity, the disease battles with you to win. Forget the hair loss, it is a game that I choose to ignore weekly when I visit the chemo closets of Hoag or UCLA. Then, there are the message boards where I only post answers and don’t follow responses since it is inevitable that there is one who has given up fighting or another who thinks “it is their time”. I stopped looking at my list of friends on the message boards because reviewing it also shows the path of destruction of this disease. I choose not to delete them from my list as they are part of my journey. Each week, there is another fallen warrior. Then, there are my weekly blood draws and IV infusions. I am now “famous” for how I approach the cancer, so nurses ask me to speak to other patients. Again, I am faced almost like a nurse with what is ahead for some. I cheer them on, but some are too tired and too sick to fight for themselves. You can’t help but to reflect on your own journey and glimpse into this path that is better ignored during the fight. A flash of ideas flood my mind on what I would do or what I would say. Often others don’t have my cheerleaders, my family, my rock star husband, and my son. I am constantly surrounded by the knowing glances, the particular nod, the look of defeat, the skeletal bodies, and some are with some hope while others forgot the word. Even though my cousin Margie is gone, she is still with me with her laughter and funny comments about the side effects of the cancer. Each person battles their own war on this disease. While I choose to look at today and continue to have hope, others choose another road.  I try not to look ahead at the predictable nature of cancer since I feel I am not so predictable. I refuse to get bogged down with the visual destruction of the disease that I face daily. Of course, the nature of this post is that the images and people creep into my daily world. It is this ongoing battle that no one mentions. You do your daily battle with the chemo, the side effects, the insurance, the doctors, the crazy infusion centers, your next plan to stay ahead of the disease, but the rest is all out there too and waiting to suck you into it. Often your fight for survival is more of a mind game. You close your eyes to the images, focus less on words of “give up” and focus on what is happening now. I focus on how I am not in pain and am more present than I have ever been since 2010. I was not a match for the tissue sample for the tcell trial. Instead of focusing on the impersonal response to the fact that I was not a “winner” in this trial, I choose to focus on the other list of drugs I can try. It wasn’t a lot, but it is small list. Yes, life of chemo is not what I want, but I am almost managing my side effects. Is it frustrating and annoying? Of course, I am frustrated and very annoyed. I cannot choose the path without hope. I choose to fight every day and help those without cheerleaders. Sometimes you have to know and accept that you have said all you could and focus on your own survival. I always said cancer is a selfish disease. I focus on what my cousin Margie wrote in one of our favorite books, There is No Place like Hope, “your wonderful attitude will continue to help you heal, and hope!” I choose my own path to never ever give up and enjoy each day to the max. This is proving to be more of a challenge living with a tween who is just annoyed with my every day questions and joy of the simple things. I will also choose to ignore his glaring looks and rolling eyes. I will focus on his laughter and his glimpse into who he is trying to become when he holds my hand and tells me, “it is okay mom, you can do this!”

“I got the eye of the tiger, a fighter, dancing through the fire Cause I am a champion and you’re gonna hear me roar Louder, louder than a lion Cause I am a champion and you’re gonna hear me roar” Katy Perry

September 24, 2013
With all my “on the cancer job” worked I did to prevent a disaster in my new chemo order, things almost worked perfectly. Yes, there were calls to the Hoag cancer center and local doc and many follow up calls to confirm that they did receive the correct order and the correct order was sent. This was a day spent on my cancer job that I didn’t have the free time. With the weekly chemo, no one can fully understand this way of life. I have tried not to put my lack of free time onto my family to create an anxious situation.  Sometimes as much as I attempt to hide this, it creeps out. My one message in this cancer job hopefully is clear to you, you must take control of your health. If you don’t make the effort, the risks are too high.

When I checked in at the Hoag cancer center, I asked who my nurse was. Unfortunately, it was the same nurse who seemed to be “afraid” of me and lacked confidence. I requested another nurse. Of course, I saw the commotion that this caused. I also mentioned my new fast pass Disneyland program for getting chemo. This idea was ignored   and not understood because this was from a patient perspective. The first problem was that the cancer center did not acknowledge there was a problem. At least, I took my time to mention how lack of communication caused increased stress as a patient. I get a new nurse and all went well. Without the addition of the third drug, I was having nausea, but that was much better than allergic reaction. Surprisingly, my blood (now on the 4th week of chemo) had held up so I could get the chemo without no crisis call to the local doc. My tumor marker went down a teeny bit, so that third drug was definitely not worth taking. There seemed to be no extra synergistic effect by taking the third drug. My UCLA doc agreed. I’m still waiting for the outcome of my tissue sample to City of Hope trial. Maybe, there will be an answer next week, but I cannot think of that possibility because of the series of steps that would happen either way. This new drug duo (even though the trio was in the protocol we were following from Japan) required 3 weeks in a row and one week off. this coming week will be my forced week off. Even thought brings me a half of a week of freedom (still have blood test, still have vitamin C IV), the freedom thought comes with its own set of concerns. By not having chemo, will my cancer grow? Will I feel worse once I start the week cycle again? What if cannot be considered or I would drive myself crazy. I just half to look at the one day at a time as usual.
Life happens and often people either dont want to share or fear that their crisis is nothing compared to my every day dealing with my own mortality. I love life and I love all the happenings which include the good, the bad, and the ugly. (if you have a teen, there is a lot more ugly) If I am in one of my own crisis, I may just say, “cancer crisis day”, but it doesn’t mean that I forgot. There is no comparison to what you deal with and what I deal with on a daily basis. I may gently remind you that life is too short to waste energy on the emotional vampires, the things out of our control, or the control we want over our kids, while they struggle to be the people who they are meant to be.  Also, I have known people to have serious crisis moments involving their own health, the health of their child, or the health of their family members coupled by financial struggles, loss of house, loss of a job, and somehow they find their way. So, yes I may not have the patience that I used to have in dealing with your crisis of “the day”, but I am here for all the rest. There is a delicate balance between my daily goal of survival and trying to live a normal life. Jim and I watched a tv program on how terrible stress is. This program categorized stress and Jim and I added each year of age for each item. By the time this program ended, we were at least 60 stress years old. You just have to laugh because we would cry otherwise. The impact of the daily stress on myself, my Jim, and  my Alex  comes out in unlikely ways. We internally”suffer” and scream while Alex may overreact to simple things or just gather all his stress in a delightful bundle and decide to shut down. We usually find our way back to hours of fun by laughing a lot even at ourselves. As I continue to draw my eyebrows on, I was having one of those days where the wig hair was just to hot for me. I turned to Alex and asked him, “are my eyebrows still on?” His response, “mom, it is okay because you still have one on!” I would rather have 2 eyebrows instead of half of a face. This also goes along with my hurry to get out of my house. While ducking to exit my garage, my wig gets caught on the garage door. Just great, another reminder of how to shock your neighbors without even trying.
This week is my “off week” from chemo since I had the 4 weeks in a row. I am supposed to be 3 weeks on and one week off so I don’t really kill my immune system. Unfortunately, I still have Tues/Weds doc stuff and calls to nurses. Also, don’t get me started about the idiots who decided to abuse the disability (or cancer) card at Disneyland. They are now changing the program to be ridiculously non accommodating. Just what I need when I spend time at the Happiest Place on Earth to work harder than a normal visitor by walking back and forth to various kiosks to get a “special fast pass”…not sure how this new program is helping. I signed a petition online which was really about autistic kids, but I figured any negative publicity may make the new process stop. I called Disneyland, but they told me to call back and so the story goes. I have loads of time for this! Until tomorrow….

Visiting the island of negativity and “hello eyebrows I’ve missed you”

September 17, 2013
My chemo day began when they called me from the Hoag cancer center to say they were overbooked. Either I could come at my scheduled time and wait for 2 hours or come 2 hours later. Of course, I agreed having little option, but I didn’t think things through. My other brain (Jim) was working in LA so I couldn’t ask him. It isn’t a hair appointment? How can this be? I have been in this same place at UCLA and it happens. I started with a new nurse who seemed nice, but a bit slow going. After waiting an hour, I finally had my blood drawn. Normally, the note in my file indicates a warning about me that I am a patient who is partnering with docs and know my treatment better than docs at times. There is only one me and they have 100s of patients. I saw my nurse with the paper grabbing the phone. What was up with that? I got up and asked for the numbers. My platelets were 79k and they have to be 80k for chemo. AT UCLA, chemo is the priority and they tend to take more risks. Platelets have to be 60k. So, I can promise that I won’t use any knives or weapons. I also saw my ANC is 1.3 which I thought had to be 1.5, but now has to be 1.0. These are the white blood cells that fight infection. I don’t feel comfortable getting chemo with no immune system. (flash back to pneumonia which I am still doing inhalers from my May infection/hospitalization) I talked to the doctor (local) who said it was fine and added the new drug. This was where it got confusing. The doc then told the nurse that they won’t add the new drug (the third). Here we go, confusion, delay, and frustration. I put on my “are you kidding,I’m in charge of my own body, and what is up with making decisions without telling me.” I freaked out my nurse and become so agitated that I placed a call to my dear UCLA doc and called the local doc explaining that I was getting 3 drugs. The order was faxed not once, not twice, but three times wrong. I decided since I was not attached to any IV that I needed to get some of that ocean air. I told Jim that I was leaving. He looked at me confused. I walked out and considered just jogging up to the hospital. My UCLA doc called back immediately, but I had left my phone in the room. Jim was unable to find me, so talked to my doc. He finally found me and I saw that he was more worried than ever. Of course, in my rant of frustration I asked for the charge nurse and nurse manager and mentioned the pharmacist (my new friend and fan of Breaking Bad). I had now frightened everyone and had been handed off to the charge nurse. The charge nurse asked me why was I causing so much trouble today as she smiled and tapped me gently in case I smacked her?!  It all got settled so I got my three drugs.

The infusion made me nauseous and I forgot this feeling of being over drugged with poison. I started taking the pills. One drug done. Second drug done and Alex phoned me asking me when we were coming home. No such luck today and he had rides planned to get to tennis. My secret hope was dinner time. The third drug started and I began to feel as if I ingested something I was allergic to (like strawberries). Jim (my fake doc) advised me to take Benadryl. They often give this in IV. I took it and was immediately better. This wasn’t a good sign for many reasons. The last time I had this drug (a year ago), I had a slight allergic reaction and then anaphylactic reaction to another chemo drug. We were concerned, but decided to wait and see. Dr Jim started his analysis I saw by the look on his face. I got home too late to eat and slept through the night. Luckily, Jim woke me up to take pills and drink a glass of water. I decided in my delirium that I will never allow myself to get overbooked and move my appointment ever again. He who screams the loudest gets the appointment. I drifted off to sleep.
I woke up the next morning with a swollen lower lip and itchiness. Oh great. I took more Benadryl and was so over drugged from the trio of chemo. I slept another day off, but decided to drink as much as I could in my waking minutes. At this point, I had sent a text to my UCLA doc, an email too, and put a call into the drug company who makes this drug. I figured the doc would do the same, but he has more patients than he knows what to do with…so since my lips were movable and not too swollen to speak, I figured I was good enough to take notes. I took great notes on all the percentage of people who have explosive diarrhea followed by a zillion other issues. My issues were listed, so I wasn’t completely going crazy. Would this reaction lead to further reactions? Would this reaction lead to a reaction to another chemo drug which I cannot afford to remove any drugs off my list that are potentially working?! I cannot afford to have an anaphylactic reaction like before especially since there are zero doctors with only a few great nurses. Hey, I saw someone die at the Hoag Cancer center, so I would rather not have it be me! I decide to escalate my complaint while trying to flush this damn chemo out, but it stays in your system longer than any other chemo. Yipee?! Of course, I cried out of frustration and anxiety. Plus, I forgot this horrible toxic trio feeling. It seeps out of your pores. You automatically look “chemo-i-fied” without really wanting the “look”. As I saw my pale/grey look with drugged eyes in the mirror, I noticed a few sprouting eyebrow hairs. Excitement! Elation! I missed those little hairs! Since I had stopped the drug that wasn’t working, (it was the one causing the hair loss) I guess my hairs are starting to sprout. It will be another adventure to look forward to, but I have no time for that. I am on the mission to get in touch with my doc. He finally calls me back and says, “STOP the drug!” Of course, this leads me to stopping the drug at all locations including local doc and confirming the cancel with Hoag Cancer center. I did all my job, but I am not confident of anything.
All I know is that the past days were full of visiting the island of negativity. I am conflicted with being so thankful to being alive, but at the same time frustrated with my every day consuming cancer job. Of course, it is worth it. This weekend at services I really read the words that I never really read before. I could do without the “stoning” and old language which is so distant from my reality. Other words spoke true to my heart. When I think about those who have gone like my cousin, the reality hits again and the anger floods my face with redness and tears. When a man who has known me for 11 plus years sits next to me asking me, “why you? how can this be?” I don’t have the answer, but just respond with more tears. While I asked for my forgiveness, I really asked for my life, my continued strength, the ability to continue my fight, and enjoy each day as much as I can. I was silently screaming hoping someone would hear my screams. Instead, I tried to find my peace and found it again walking along the beach and the ocean. Deep breaths, big hugs, much laughter, and I am off the island of negativity. Today is a great day! Sunshine surrounds me! Please find your sunshine today.IMG_20130915_162522_573

“Drink deeply. Live in Serenity and Joy.” Buddha

September 9, 2013

Image Image

Geez, I have yet to learn the moderation mode. It is difficult to explain, but I often fear what I cannot do tomorrow. With school starting Monday, I just know I will be down for the count in chemo land the rest of the week based on what happened this week.  There is so much unknown and so much out of our control when walking this tightrope. If I can foresee or control any small need for Alex, I tend to push myself overboard. Thanks to many of you who continue to help and support our family whether it be with prayer, positive thoughts, lists of schools supplies, or suggestions for a successful school year. Every bit helps.I went into overdrive on Friday which was the first day I could drive. Proudly wearing teal from head to toe, I scanned the area for other teal sisters or supporters. I didn’t see any, but that isn’t important. Thanks to my teal supporters especially my niece Sofia who looked cuter than cute in teal. I did run around too much and paid for it the next day.

This new (old drugs, new combo) treatment has me feeling horrible. I can’t explain the drugged hungover feeling. It just makes you feel gross and silently you hope the mixture is working. I tried to look up the side effects when I was on the drugs at different times, but my notes are full of chemo land jargon which is like another language! It is so confusing since I think I have now had over 14 different treatments. I do have my notes, but some are confusing. It is as if I had a pen in my hand and fell asleep. Then, I woke up and started the notes again. I wish I could keep it all straight and that is why I have my real brain with Jim. He keeps track of most things that I lost track of…somehow I still remember all the silly things. Unfortunately, I am back to missing words or using the wrong word for the wrong or right things. Somehow I have lost my words, but I do have all the feelings. I still have the surge of frustration with the situation. I try not to get caught up in it or start worry about the reality of the situation. I focus on today. I take some deep breaths and feel the ocean breeze. I look at my little Buddha and think happy thoughts. Today I will find my sunshine as I do every day. One day at a time.

The only way to make sense out of change is to plunge into it, move with it, and join the dance. Alan Watts

September 6, 2013
 The day of changing the drug happened. I decided that this was my best choice on what we have learned from our mistakes in the past. If you looked at the picture of data, it told a story. The key is always that you look at the data because for me by the time my docs look, my cancer would be out of control. Instead, my cancer is growing fast, but not at the record breaking speed. It is a difficult place to be. To face change, to face reality, and it always happens at the worst timing ever. Just like the boulder flying into the windshield, the broken room in Monterey, and the maintenance on lab equipment that all my docs need the results to make a good decision, I am convinced there is a cancer candid camera following me around. You really have to laugh or take a few moments to cry. Yes, my moment happened with Alex’s Principal of Middle School. Luckily, like me he likes to laugh when there are situations which have no answer and had no tissue, but offered me some glad bags instead!

Honestly, my visit to Hoag cancer center for a simple blood draw is worth a mention since it is so unbelievable that people who work for a hospital talk to patients like we are idiots and without any bit of compassion. I have learned over the years to expect a level of “service” as a cancer patient. I have visited USC, Cedars, UCLA, City of Hope, Scripps, and MD Anderson. My expectation of level of service is very simple. It is to treat people with kindness and a teeny bit of compassion. When I entered the cancer center, there was an ambulance out front. I just didn’t want to think of another cancer patient falling, but was reassured that there wasn’t a crisis yet. Then, I learned that yesterday was a day for implementing the sorting of patients by some new method of madness. I was sent to a closet within a closet with zero waiting area. I decided to stand. Looking around, I decided that this new method had to be administrative since it was without thought to a patient. Based on my previous closet experience at UCLA’s closet, this method was clearly in the style of either 1950s cancer center or maybe 1970s. Psychologically, this new method was not good. Who wants to enter a closet and get any drug? Plus, sit too close to the next patient that you could hold hands even though you don’t want to hold hands! Of course, I voiced my concerns. Looking at the faces of the patients, I felt their pain and saw their sadness. I wasn’t going to let it zap my positivity. I got the first results of my blood test for my counts which were surprisingly good. Power of the chicken! I am becoming a chicken I think! Too much clucking from me for sure! I was assured like normal that my tumor marker would be back in 3 hours.
So, instead the mystery began and I had no lab results. I called the lab and was told the machine was broken. I couldn’t understand and began to ask more questions and was transferred to a supervisor. The supervisor told me that Tuesday was maintenance day. I asked who decided that tuesday was a good day to take the machine down after Monday was a holiday. This person told me that she didn’t have time for me and Tuesday was maintenance day. Too bad so sad for me. She talked to me like an idiot and had zero bit of kindness and compassion. Even though I told her that this number would determine my next chemo so it is a matter of life and survival. She repeated that she had no time for me. I asked for a manager. I called the manager and he was shocked that I had his number. He wanted to point the finger at someone and wondered who told me to call. I told him it is called the Internet and how I found the number and it was all my idea. I asked him about maintenance Tuesday and he felt that it wasn’t the cancer center’s concern. He was more concerned about how I got his number than solving the issue. I explained that by not communicating this info, it creates more stress for patients who can become angry and upset with the nurses who could have reassured the patients by communicating the problem. I told him after he told me that I was not first in line, to pull my blood and put it in front. He said he would consider what I said….I know now that his error in lack of communicating caused a 10k mistake because the pharmacy got my order too late and mixed the wrong chemo. I bet he will be changing his Tuesday maintenance especially after a holiday. After talking to the manager of the cancer center, she was shocked to learn that the lab does maintenance in the day and said always it should be done in the middle of the night? Plus, she told me about the new sorting of patients which makes sense, but she lacks space to make it happen in a pleasant way. This is the new closet design. She informed me that Hoag Irvine was going to do infusions in the future. That would be so much closer and I love Hoag Irvine for many reasons.
On Tuesday night, my amazing UCLA doc called me about 4 times and discussed over and over options. He told me of a new drug which would work for me that was just approved and matches my weird genetic mutation discovered by Foundation Medicine (that is an NF1 mutation). Jim came up with the idea for the drug swap based on his analysis of what has worked in the past. The Clearity foundation docs, Dr Deb and Dr Laura are also on our team. They agreed with the swap and came up with some more ideas. These ideas matched my UCLA Dr K’s ideas. It seems that instead of 2 options that there may be about 5. This gives me piece of mind. There was some question of dosage since this drug combo is used more often in gastro cancers. First, the dosage came back as if I weighed the same as a horse (Jim and I knew this dose would kill me), so luckily my Dr K found a study in Japan which was found for my cancer with a weekly low dose combo. OK! We are off with a plan. Plus we are still waiting the results of the tissue test for City of Hope. This Japanese study had actually 2 women who achieved total remission. I can dream can’t I???
This new drug combo has its positives and negatives. First, I will grow my eyebrows and eyelashes back. Yes, for no more constant blinking to avoid dust in my eyes. Yes, to avoid drawing on crooked eyebrows. No more cold anything…eating cold will feel like razor blades in the throat. No more opening the fridge or freezer. Where are those gloves?  I do feel like crap and was in bed all day yesterday. I am praying and hoping that this Jewish new year brings the power of this new combination to work!
On a fun note, Alex talked to the congregation at our Temple about what he saw at the local food bank which was empty shelves. Jim said he did great! Alex said his legs were shaking, but Jim said you would have never known especially when he convincingly strongly stated, “give up your Starbucks and buy a box of cereal to donate!” love my boy!
I get these surges of anger followed by tears, but each time I am reminded about how lucky I am to be alive. I remind myself of my amazing family, friends, cheerleaders, and all those I met for an instant who changed my life. I look outside and see the sunshine. I know I will find mine. I hope you find yours and know how lucky you are that every day you don’t have to walk the tightrope of life like I do. It isn’t a pity party, but just the realization that your crisis is YOUR crisis. Just gain perspective, look outside, see the sunshine, and take a deep breath. You will be happy you did. I always am happy to live in the now. Find your happy moment today!