Cruising with Cancer

April 18, 2014

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A random list of thoughts about cruising with cancer:

1. When food is not my friend, the last thing I  want to do is pick out food from a buffet while being surrounded by plates overflowing with mixed cuisines.

2. Walking on the deck, I worry about my wig flying off and into the sea
3. Waking up every morning to the sound of the waves made by the ship, ocean breezes, and ocean everywhere
4. Smell of Caribbean missing the seaweed smell of the Pacific
5. No worries about mixing wine, rum, and chemo
6. Seeing my hubby smile, son laugh
7. Wondering how I can go up and down the 14 flights of stairs and a few days later wondering why I would ever use the elevator
8. Seeing cruisers smoke non stop, drink non stop, and wondering why they feel nothing of the consequences of their choices, while I have been poisoning my body with chemo just to stay alive. Short term anger followed by thankfulness to enjoy the cruise. Meanwhile more casualties of cancer loose their fight the same week while I’m enjoying the Caribbean
9. Even though I can’t taste most food, the beauty of each presentation is a visual feast for my eyes
10. While my hair is showering into the tub, I hope that it doesn’t clog the tub and that my eyebrows don’t completely fall out before the formal night
11. Drawing on eyebrows while the ship moved can be a difference between a happy and an angry facial expression
12. Happily walking on deck with my hubby after a rain shower while the rest of the passengers complain there is no sun.
13. Enjoying every moment! Blood count decisions, hibernation, chemo pre meds, and drug toxicity is replaced with: when is my next meal, what show do I want to see, and where to sit and read a book/listen to music
14. Where listening to music to drown out negativity and crying/moaning patients is replaced with listening to music to drown out drunk passengers and listening for pure enjoyment rather than a means to coping with chemo closet
15. Answering questions of what to drink and eat, where to sit, instead of talking about all my ailments daily: nausea, digestion, appetite, pain, diarrhea, bowel movements…there is much to be said from not answering these questions daily, seeing the faces of cancer, and taking a vacation from the cancer job…almost forgot that I had cancer!
16. All of us needing this break from the monotony of my efforts to stay alive and loved watching my boys enjoy the vacation as much as I did
17. Easy to stay positive when all that is in your daily view is turquoise waters, tropical cocktails, suntan faces, and smiling cruise staff instead of the grey, gaunt, smile less faces of cancer.
18. Easy to ignore aches and pains because my biggest worry is what time my next meal is
19.  The secret that I have that every moment is the most joy and happiness I have felt in a long time
20. The secret that no one knows or can understand what my family deals with on a daily basis and all is replaced for one week of fun and few worries.
Now this week is reality to Hoag cancer center daily and the blood moon must have done a number on all cancer patients. I have never seen and heard so much negativity for a long time. (Or my week off had made me surprised to hear the pity pot stories again) Even my nurse comments to this crabby cancer patients to look at me because I’m smiling. I’m smiling because what else can I do. I refuse to join the crabby cancer groupies. My nurses beg me (literally beg me) to keep doing what I’m doing because it is working. The Hoag chaplain shakes her head in disbelief as she thought I wasn’t even sick. How do I do what I do, she asks me. I can only tell her that I compartmentalize most of my issues. I have no knowledge of what normal feels like. I have had glimpses over the years, but now as long as the pain is bearable, I choose to ignore it.
Frustration continues when we are told that the immunotherapy trial by EMD/Serono (Merck) decided to pull the part for ovarian cancer patients only. Even though, there was a list and I was on it. Even though, it was told to the doctors that the 31st was the day it was to be open. They pulled my not so popular ovarian cancer from the list of cancers to try with this new drug. My doc was not happy to say the least and escalated it to exceptions, VP, etc…He is concerned like we are concerned that my blood cannot take the constant beating of the chemo. Since that choice is out for now, I will not have a scan. There is really no solid plan B, but nothing I can do at this moment except take things day by day.
A reminder for those who have priorities messed up: enjoy today, listen to your kids, make the most of every moment, find your sunshine…please!

You make living with cancer easy: Believing in a cure, giving thanks for what you have, and NEGU (never ever giving up!)

April 3, 2014
Yes, I am told that I make living with cancer look easy. Is it my hair, my NEGU team, my docs, my nurses, the food, or all the rest I do? I have no idea and I really wish there was a magic answer. All I can tell you is there is no auto pilot in any medical issue. You have to take control and make living your priority. I know this sounds easy, or maybe it doesn’t.  I am consumed by tests, many visits to the cancer center both UCLA and Hoag (more than I would like!), drugs, supplements, eating, exercise and just plain living. Living with cancer is like training for a marathon with many unknowns and a lot of ups and downs along the way. Not like I have trained for a marathon. I know I am thankful for my body. As it speaks to me, I whisper words of thanks and treat it with kindness too. Thank you body! Thanks for not being too tired even though I know you are. Thanks for yelling at me to rest and keep you safely away from germs. Honestly, your body does talk to you, you just have to listen. Yes, I often feel that something is not right, and I am proof that when something isn’t right, it isn’t right.

My nurses tell me to stand strong in the way I handle my disease and don’t waste too much time explaining to others what or why I do what I do. No one can fully understand what I do on a daily basis to stay strong. I still like to reach out to others especially those who are in the fight. I do have to apologize for my approach. I have seen a lot and seen a lot of women lose the fight. So, I don’t have tolerance for doctors who can’t think outside the box and patients who want to be on auto pilot to manage cancer. Yes, I wish it was so easy, but it is a job. I have explained it simply.  Having a cancer job means that just like you question what you put in your mouth when you eat, you should question the medication put in your mouth and in your veins. It also goes further than that. Get to know your body. I believe I have made some mistakes in the past like walking around the San Diego zoo with little immune system to end up with pneumonia. About 9 out of 10 people I sit next to at the infusion center have no idea what drug they are taking and at the same time having horrible side effects from chemo. No one should be vomiting from chemo. There are loads of drugs to manage side effects. Also, I am a firm believer in eating. Yes, I can’t taste my food and have no appetite. You need food to stay alive. Yes, I believe in supporting your body with a variety of things both holistically, naturally, and plain old pharmaceuticals. When it comes to cancer, chemo kills cancer, radiation kills cancer, surgery kills(removes) cancer, but food supports your body. If you want to find what will kill your cancer, find the right doctor. Each doctor has their expertise. This is why I have a large team of docs. They all have something to add, but I know without chemo I wouldn’t be alive. The chemo kills the cancer for me. Each person is individual and there is no one size fits all approach. Cancer is scary. Answers are scary. Understanding how cancer behaves is scary, but it isn’t. With so little control, the control has to be in the understanding of it all. I get lots of questions and a lot of upset patients with their doctors. There is no one to blame except for the patient needing to ask the difficult and specific questions to their doctor. When the doctor can’t answer, find a new one. Doctors are not fortune tellers and don’t have all the answers. My oncologist is my partner in my treatment. We have learned a lot about cancer, each other, and lots of chemo drugs. He understands my motivation and my tolerance, so we work together on a plan. I know he has 100s of patients and each has motivation or a set of issues. I make myself his priority when I have to.
So while my blood counts are finally in a good range and safe range to exit my house, I will take a vacation. I will take a break because I deserve it and my boys deserve it. I will appreciate every moment after all these weeks trapped in the house. I will enjoy my boys and not sweat any of the small stuff. Sometimes you just need a break from cancer. Spring is here…enjoy your day, find your sunshine, live for today and don’t let the small stuff invade your every day. A few more words I have to say. Don’t procrastinate doctor visits…make your appointment today. Your health is too important. Thanks to all the supporters! Without your help especially with Alex, today would be different. One last tip from some amazing teachers Alex has had: listen to your child(ren) and pay attention to their body language. Often, the body language says it all. Just listen, don’t solve their problems. I know it is difficult to not give words of wisdom, but often those words can wait. Again, make the most of your day! As my dream of tropical breezes becomes a reality, I will be making the most of all these days without chemo. Bon Voyage to the Caribbean! In a week or so, I will be back to the chemoland and closet. Until then, mai tais, mojitos, and martinis!

“I look at the good. When you are relaxed, your body is always relaxed. When you are pessimistic, your body behaves in an unnatural way. It is up to us whether we look at the good or the bad. When you are nice to others, they are nice to you. When you give, you receive.” Alice Herz Sommer

March 26, 2014

A quick update…since my lovely anaphylactic reaction to the chemo on 3/12, trip to UCLA trauma via ambulance (vaguely remember good looking paramedics?!), I am now back in hibernation with .03 white blood cells to fight any infection. I know the routine: hibernate, mask, no raw fruits, no vegetables, and hose off any middle school child who lives with me! Tomorrow, I will go back to Hoag to check my blood again. In the meantime, there are the usual threats of antibiotics and lock down in hospital. I don’t fall for that trick, so I remain at home with no more episodes of anything to watch. I watched it all during the last 3 week lock down. This time we have no time for 3 weeks and I took a shot to boost the white cells equivalent to 10 shots, so I can exit the house asap! I MISS PEOPLE! (Okay, truth is that I only miss some people since I still like to avoid emotional vampires and I have zero tolerance for negativity.)

My organization has gone out the window, so I have time to fix that. My analysis paralysis continues of all my data of drugs. With the allergic reaction, I had to toss out a class of chemo drugs which used to work great for me. I was given a drug combo which I had about a year ago (even had it in Waikiki to be exact), but my bone marrow needs a giant break. I am really a chemo poster child. I know how to deal with all side effects of dozens (okay 20 different chemo combos) of drugs and manage to have a life. I cannot call it a normal life, but it is my life and I love every minute of it. So, you know when I read in Oprah magazine that a woman is giving up after only one year of chemo, I scream at the magazine, “are you kidding me?” Unfortunately, as a chemo poster child, I hear it all the time. I know how difficult the drugs are and yes, I would rather have hair and not have constant gastro issues. I would like to taste my food, but we eat with our eyes too!  I have lost track of how many weeks I went to Hoag or UCLA and lost track of the number of times I am asked the same questions about my nausea or lack of appetite. These maybe should be revised for me. Not sure what the series of questions I should be asked. All I know is that I am not 90 and don’t enjoy talking about all my bowel issues. I am living every day to the max, so I would like a new question/reward system.  I am still looking for a reward system or punch card system. Congratulations you win a FREE tshirt since you have completed this drug combo and answered 4 questions about nausea and diarrhea!

My last comment is about nurses! You know I love my nurses, but when I meet one who decides to tape my breast (my entire breast) when accessing my port, there is an issue. A small square inch of non adhesive tape is all I need. I am not expecting to do skin grafts on myself.  I want another nurse. If I tell you that I don’t want a nurse, I don’t want a nurse. What is with the questions or putting it on me that I am “difficult” or calling me PIA (pain in the ass). Call me what you want, but how about focusing on my experience? I am a professional patient approaching 4 years of treatment. Besides not getting a tshirt or a punch card, I have high expectations. I know my “stuff” and I’m not afraid of information. Maybe if you are afraid of telling me, you may want to choose something other than oncology. There are major warrior nurses! When I meet one that doesn’t meet my criteria, I am not sorry. Too bad too sad, but I have things to do even if it is hibernating. So, off I will go back to my hibernation zone with positive thoughts of white cells growing, growing….and on count down to exiting!

The good, the bad, and the ugly: my weeks of hibernation and cancer job continues

March 9, 2014

Over the past 3 weeks, my body has been unstable with lack of immune system and now lack of red blood cells. My thoughts are foggy as I completed the 5 days of chemo. This will be followed by next week at UCLA.

My only way to sort my weekly thoughts is to categorize them. It may not make sense, but it is the best I can do now.

THE GOOD

  • The tumor marker going down: less cancer=less pain
  • Negu team: family, friends, acquaintances
  • The bakers who bake treats for nurses
  • 30 days until cruise
  • Visit from Katja and family
  • Hugs from Alex
  • Hugs from Jim
  • guardian angels at DJAMS
  • emails and calls from Alex’s teacher team at DJAMS
  • doctor team
  • hibernation allows for rest
  • I’m alive!
  • Living with cancer
  • the hope
  • music
  • living in Cali

THE BAD

  • White count going away=NO IMMUNE SYSTEM
  • Red cells being eaten=TIRED, LACK OF O2 IN THE BLOOD
  • Port clogged, needing “draino”
  • Jim being gone all week
  • Question of the week from Alex: Why is ovarian cancer not as “popular”? Answer: no one lives long enough to make it worthwhile for pharmaceutical companies, for someone to be a spokesperson, no famous person with ovarian, the excuse is that the battle is too challenging to find time to speak out
  • Learning to listen more, talk less
  • Tired of ongoing fight from all including me=life goes on, but my fight continues daily
  • unable to think beyond tomorrow
  • feeling alone
  • clinical trial delayed

THE UGLY

  • Tears
  • Nightmares
  • Alex hating cancer more than I do
  • hibernation equals loneliness and isolation
  • continued loss of cancer friends and acquaintances
  • the look of cancer: being beaten by symptoms of either chemo, cancer or both
  • annoyance and frustration brought about by living with cancer
  • the fear
  • the unknown
  • The puzzle: No answers or solutions

 

No immune system! WBC dwindling BUT tumor marker GOING down!

February 23, 2014

I am entering week 3 of isolation, mask wearing, and hibernation. This has never happened to me. The chemo on the 12th was more than difficult. The chemo ate my blood cells and some cancer too! Finally a beginning of a downward trend with my tumor marker. I think my body found the entire allergic reaction and druggy experience unacceptable. I haven’t felt right since then, but found out last Monday that my counts were horrible or non-existent. I was told by my nurses and doc to look for signs of infection. No fever, but be on the look-out for violent shakes and chills. Without any white cells to fight infection, a fever would be unlikely. There was talk of real isolation in the hospital. Luckily I had some private coaching and assured my doc that I would not eat raw fruits and veggies, wear a mask, stay home, and avoid my husband and Alex. Luckily I still have my hearing! I can still hear conversations between my boys, laughter, and even a Skype call where Alex turned his face into a cat with much laughter on both sides. We are all in isolation with Alex going to school and coming home as a potential carrier. He understands the danger. We speak behind doors and use technology of texts and emails. I continue to take shots to boost my counts, but after 8 shots, my count only moved from .03 to .04. You would have thought my counts were normal as the nurses cheered at Hoag that my counts did not fall to zero. After another conversation with my doc, he told me that I can expect to skip chemo next week. We want my counts to be normal because more chemo means more disappearance of my immune system. The unfortunate thing is that my body is in slow motion and fog. It just isn’t working right yet. No reading, no cleaning, no speedy tax prep, just sloth like behavior watching movies or tv and much rest is my routine. So, here I remain in hibernation/isolation. Tomorrow, we will check to see if things are turning around. If I am unable to get chemo, I just have to focus on healing my body. I wish I could say more, but I am out of balance without my immune system. More sleep and dreaming of sunshine in the days to come.

Another allergic reaction…back to UCLA on Weds

February 11, 2014

I just looked back at my description of my allergic reaction in 2012. This was similar, but worse in many ways. The chemo drug requires 3 L of fluid and the fluid was going in, but not coming out. This was the first problem as my nurse explained that “old people” have this issue. I am a 90 year old in cancer body years.  My stomach was distended which we did not notice until later. It all began with a wave of nausea, so I took a pill for that only thinking that it may help. Then, chest pains began and I called out to my nurse. My mom saw a rash creeping up my neck with splotchy dots the size of dimes on my chest. Mom sent a text to Jim to come too (he was on a call for work). Next thing I know, I had 5 nurses, a call to my doc, push of lasix to get the fluids out, plus steroids and push of benadryl. It was a long 15 minutes, but lasix finally started working. In the bathroom escorted by my nurse and mom, I saw the rash was now descending like a huge blotchy sun burn even on my legs. The chest pain continued and the rash burned, plus a few other issues. Things were not resolving as fast as they should have been. I couldn’t talk, but called out new symptoms while telling my heart to calm down. I was also on oxygen. I love nurses especially my infusion nurses. They worked like a well oiled machine speaking in codes with a responsive rhythm always calm and focused. I kept looking at their faces for answers, but no one was stopping this rhythm until my rash, BP, chest pain resolved. It seemed to be hours, but was about 30 minutes or more. Finally, relief and I could speak and almost smile. My doctor arrived to see me this way and I later told the nurses that I bet he thought we made up the whole story to get his attention since things hardly looked that bad! Then, decisions needed to be made. Do I want to continue this chemo? I looked at the audience of nurses, Jim, and mom who were mostly shaking their heads, “no” and I said that is not what I want to do. Instead, we will try on Weds a drug in the same family with different fun side effects hoping it will work and I won’t be allergic to it. I also have a side problem of having no white blood cells or neutrophils to fight infection. So, I will live in the bubble today. This doesn’t mean I cannot go in the car like a dog with my head out the window. My head is full of fog from all the drug pushes from yesterday. My body aches from the shots to increase my white count, but there is sunshine today. I will find mine. Hope you find yours!

By the way, for a laugh yesterday, Alex called us during the crisis. He heard what Jim said, but once he knew I was fine told Jim about his pop quiz which was his crisis. Glad to know that he wasn’t worried at the time.

“But if you close your eyes, Does it almost feel like Nothing changed at all? And if you close your eyes, Does it almost feel like You’ve been here before? How am I gonna be an optimist about this? How am I gonna be an optimist about this?” Bastille

February 5, 2014
Finding my balance, finding my perspective, I was lost when I heard that my tumor marker hit an all time high of 1470 on last Monday. I did the usual analysis only to find that the data wasn’t giving me what I wanted. Each time over the last 3 plus years when I received chemo, my tumor marker always fell even if just a few points. This wasn’t the case. I analyzed my symptoms comparing anything new. I looked at my notes. I was listening to my body, but it was whispering to me. Some symptoms gone and some new symptoms, but what did it all mean? I contacted my doc who decided to move up my chemo and also schedule a procedure to attempt a biopsy and drain the ascites. I never asked enough questions still feeling the weight of confusion of unclear symptoms and cancer growth. My mom arrived for the week. My usual refocusing or redirecting or even trying to detach myself from my discomfort wasn’t working. Every morning I was withdrawn from my circle of love and confused from my body whispering. I was foggy even though each day I found some happy moments. When overwhelmed by my new discomfort only described as heaviness, I was unable to push my awareness away for long moments. The routine that we attempt to maintain for Alex’s sake seemed to exhaust us all. I was happy to have my mom here to push me to enjoy each day something only explained by a mother daughter relationship. Words unspoken, but understood. Less stress of having to explain my thoughts, I felt alone, and wanted at the same time to escape. Not sure where I would go, but it all seemed too much. The confusion by the consistent unexplained caused me to be more withdrawn.

Arriving at Friday, I was definitely not asking the right questions when the doc explained the procedure to us. Lucky for me, my team of Jim and my mom added important information that I forgot. Hours and hours passed. Unable to find the right non allergic adhesive for my port, I had some itchiness. Each step was again a reminder that you need to always have someone by your side. I was pushed on the gurney to the procedure room and there was someone else in my room. I joked that this must be a 2 for 1 day, but all seemed to be confused. I wondered if the person on the other gurney was awake enough to know what is happening. I wasn’t hooked up to any sedation drugs yet. First, the Female Fellow walked in and all I can say is that I blocked out her name because #1 she had zero bed side manner and #2 she wasn’t the doc we all talked to for over 30 minutes in pre-op. She annoyed me with her attitude towards my questions. She annoyed me with her confidence which had no connection to me as a patient. As smart as she was, she was stupid in knowing what a cancer patient needed to hear. I demanded the first doc, I demanded the chair doc who my oncologist expected to do the procedure. As expected, the attempt for this biopsy was not straight forward. She casually explained what she would recommend which sounded like a major procedure, invasive, requiring much recovery, and she said it as if she was just going to brush my teeth. No big deal to her. I demanded to get answers from my oncologist, asked to call my husband, and thrilled I could get my act together to stand up for myself. My oncologist arrived and this long story short turned into having no procedure done. I have chemo on Monday and this procedure would not yield enough tissue safely to help me in any way. I was thankful that my oncologist was there. So, what ends up to be the longest day ever resulted in no clear answers again. The only news was that I had more pelvic ascites, but I never asked if this could explain my new symptoms. We left at 9am and returned home at 7pm. Lucky Alex was taken care of, so he had no idea about the saga.
Monday: I was exhausted. Was it due to the fact that it took 3 calls from me, 5 calls from Hoag, plus an email from my oncologist to get my order right for Monday from the local oncologist? Was it due to the fact that my 8:30 appointment, turned into an appointment starting at 12:30? Lastly, was it the fact that in 10 minutes I missed the mistake that I was given double the dose of  IV anti nausea meds? Just what I needed was an overdose of anti nausea meds. My favorite mixologist pharmacist attempted to lighten the mood by first saying he told them I don’t usually get that and that I will have a bad hangover headache which will now require more meds like Ativan for the anxiety and oxycodone for the pain?! I was beyond reacting telling myself that any energy required to address this should be reserved for Alex in a positive way. My silence had a greater impact with numerous apologies and recipes to avoid the constipation caused by this accidental overdose. Then, my tumor marker was even higher from Monday at 1700 (norm is 35 and my norm we think is 13) and now record breaking for me in the over 3 years of treatment. Shock, disbelief, and frustration barely describes what I was feeling. I was numb to this news and confused. Jim provided constant reassurance even though there were words unspoken for what this could mean. I know both our minds wander to what this rising tumor marker could mean. Instead, my rock star husband made a list of next treatments and focused on all things positive for me. We scheduled a call with my oncologist. Before the call, we decided that I must continue with this next cycle of treatment to know if it is working. We also decided that to be smart I will need another scan after that. My oncologist agreed and was equally agreeable with Jim’s list of next ideas, plus he will attend a conference this week and find some more ideas. So, we can do what we do which is take things day by day. Find the happy moments in these cloudy days and appreciate every single day no matter what!

Knowledge is power and connecting the dots!

January 19, 2014
There is no one who knows your body better than you. If you have a hunch that something isn’t quite right, follow your gut. I always have said to ask questions and understand what you are taking. This applies to any and all medical issues. So, when my week started with hideously low counts, it was up to me to connect the dots. More chemo equals lower counts. You have to know the general side effects. Granted I usually end up with one not listed like growing hair on your teeth (just kidding). I had to explain what was going to be done at UCLA and connect the dots for not one nurse, but two. I laughed to myself at the little notebook I found that Alex used to use for his “Blues Clues” and wrote down the list of items needing a doctor order. We have to monitor my counts weekly or I could be the ticking time bomb on the weekend. There has to be a plan in place instead of the old method of treating things as they happen. I don’t have the luxury of time to play around and experiment. I come up with a plan along with Jim and ask the nurses to get the local doc to complete the plan. It took them hours of effort since I know I am not a priority for this doc. I also know that most oncologists are juggling their patients and giving attention to those who cry the loudest or those who need the most help.

This week I am reminded that there are other oncologists across the country and even around the world that don’t have the knowledge to think outside the box. Having chemo every day, I am faced with not only the reality of what cancer brings to the patient and his/her family, but that many are told too early that there are zero options left. Some of these patients have only had at most 3 standard protocol. My list is now 19 treatments. I give out my list like a goodie bag after a party. My hope is that these patients will NEGU and demand the treatment that I have been fortunate to get.
It is always important to say thank you to each member of your team. My honest discussion with the palliative nurse broke down the barriers I’ve been keeping for weeks if not months. She was able to provide specific advice for my concerns instead of just giving me “the line”. She completely understood what I do, why I do, and my goals. Her belief is that the mind is a powerful tool and that the key to living with a chronic illness especially cancer is to take control and keep control of your treatment. Once you give in to others making your decisions, the journey is over. I expressed my frustrations of living with cancer and without having much free time. She insisted that free time comes in all forms and it is important to value the moments. While my cancer continues to grow, the daily treatment is something I must tolerate especially when my oncologist said, “you have to do this.”  I sent an email of thanks to this nurse. She felt she did nothing, but I found that she had a magical way of dealing with the truth combined with ways of handling all these wretched side effects.
Another conversation was with the mixologist (pharmacist) who took the time to explain the science behind the toxic powerhouse I am getting on Tuesday. He had such a perfect way of explaining the true dangers of the drug to make his point of being hydrated is key to avoiding kidney damage. I keep telling you that if you reach out to people, they will surprise you. I’ve had some refusals over the 3 plus years, but most were eager to help in any way they could providing their expertise.
With my growing cancer comes the reminder of the days with my “lizard baby or alien baby” from another time. The continual discomfort which leads to perpetual pain is something that I keep putting aside in my mind. This is the only way to live my day to day. The ascites is a constant reminder along with my growing waistline. I try to focus on the present moment by talking to Alex or listening to his laughter or watching Alex and Jim play basketball. Seeing their smiles, I feel such joy that it seems to outweigh the discomfort. My week will begin with the blood tests followed by vitamin c infusion which helps with side effects and off to UCLA Tuesday morning very early for my day in UCLA’s closet. Minute by minute, hour by hour, I live for the moments which distract me from my cancer symptoms. I encourage you to thank the people who are often forgotten by the amazing job they do each and every day. I am extremely thankful for Alex’s teachers who are secret angels who watch over Alex every day and understand both his good and bad days. You can make a difference in a person’s life by just saying, “thank you” every once and a while. Few words go a long way. Find your sunshine. I WILL find mine.

It takes a village to survive cancer!

January 12, 2014

My new lessons learned are: it takes a village to survive cancer and know your history because your life depends on it! I am sure I realized this before, but I am often slapped in the face with the reality.

Besides visiting the Hoag cancer center on Thursday for one more transfusion, I was trying to be in a zen moment. This was definitely difficult with the over crowded situation. It took me back to the days of the original UCLA chemo closet. I was surrounded by moaning, groaning, vomiting, and crying. Geez, I was just trying to pump myself up with blood. I kept on with my smiling face and my closet mate asked me what type of cancer I had. Of course, she was amazed since I never really look as bad as the story goes. She began to ask me about some of my tips and tricks. I realized she was another one who thought there were few options since she was limited by a doctors inability to think outside the box (well actually outside plan A and plan B). She hardly had any chemo regimen and was already repeating with the same drug. It didn’t make sense to her and I definitely would question that as well. I gave her my usual speech on who to talk to, what I took for nausea etc…I realized the blood was barely dripping. Of course, there was crying from next door and continued by apologies from the nurse. There was a crisis which was followed by a request to be silent. I definitely draw the line at silence. We are all in this closet hell fighting for our lives and silence was never part of the deal. Why not remove the crisis causing patient away from the closet instead of forcing a crowd to silence? I continued with my tips and tricks for chemo while she took notes. She left and I was stuck in silence with some moaning coming from the other side. This cancer center is definitely in need of an upgrade.
Friday was my scan day. I have to say that going to Hoag Irvine was like going to a class reunion. Besides my scan going without a hitch, I had a great technician who actually had the “hold the breath” timing down perfectly. It really makes a difference even though it sounds simple. I tried to not let my mind wander as I waited for my report. With my tumor marker approaching the highest point like in March of 2013, I am concerned with my symptoms, but try to ignore them at the same time. Once I received the report, I skimmed it and realized it was confusing to me. I was also concerned that it didn’t read correctly for the trial at UCLA. I decided to follow up on a favor with one radiologist at Hoag who said to call him if I ever had questions. Again, you have to try to reach out to anyone who will talk to you so that you really understand what is going on with your body. It is key to know your medical history, your body, your treatments, and understand how the cancer behaves. You can’t rely on anyone else to connect the dots for you. So,this radiologist went line by line reviewing and comparing old reports to this new report. I realized that as sad as it may sound that I am happy to have metastases in the abdomen with the ascites because none of this had infiltrated any of my abdominal organs like colon and liver which is common. Even stranger to say is that I have enough disease for the trial, but not too much to not be able to continue fighting. Again, there is always the risk/benefit analysis that is done. I had appreciated this time this radiologist took from his busy day. He even explained the pattern of what he sees in scans left untreated or unresponsive, so I understood the pattern of the disease clearly. He also commented that I am way too young to be dealing with this and he was happy to know that unlike most oncologists, we are proactively treating this cancer growth. He commented that many wait until the next scan reads that the cancer has spread to the bones and brain.After talking to him, I realized that I must talk to the doctor who read my scan from Friday. Through a lot of help from a friend at Hoag who treats everyone who walks in the door like some long lost family member, she asked the doctor from the darkness of reading room call me.  He called and went line by line and I explained the requirements of the clinical study. He added an addendum to my scan. Again, I ask myself what the other people do. Granted it took the entire day to get this all done, but I was happy that my brain kicked into fake doctor mode and had the ability to get the information I needed. I also realize once again that it takes a village to survive cancer. Yes, family and friends are required along with your own personal NEGU cheer squad. It really takes the village of skilled hospital staff including lab workers, scan technicians, registration experts, all nurses at every medical facility, pharmacists, and each and every person who touches your medical records to help you survive cancer. Of course, they all don’t realize their gifts, so take time to thank them. Just a short email can go a log way or a simple, “thank you”. For example, the technician who took my last scan may have been able to get the most clear detail just due to his every days skills that he takes for granted. He may not realize his impact to your life. Even the phlebotomist who expertly draws your blood without even one mark. For me, the nurses everywhere I encounter make a huge difference. On the opposite end of the spectrum, there may be road blocks along the way. We refuse to accept “no” especially when it is completely illogical and especially when it is key to my survival. Of course, these paper pushers have no idea the “no” impacts your life and stress level. You have to look at the whole team and appreciate the value of what each person is contributing. They may not know that their efforts are keeping you motivated and alive. This all goes back to my message of kindness. A little bit of kindness and gratitude can go a long way. I am so grateful to my village each and every day. With the upcoming Monday to Friday treatment this week, I am going to find something fun to do today with my boys. I hope you find your fun moment and try focusing less on the silly stuff.

Power of the mind…remembering Waikiki 4/2013

January 8, 2014
Yesterday with the unexpected blood transfusion came the reminder of how miraculous the body is and how powerful the mind is…you see my blood counts were drastically low. They were so low that the charge nurse plus a few other nurses had to come and see for themselves. They were looking at me with many comments that others with these counts couldn’t walk, talk, and would have called 911. I admit that on Monday something seemed a bit off. I decided to go for a sunset walk with Alex at the Dana point harbor. While he jogged along side me, he encouraged me to run which I didn’t or couldn’t even think about. Seeing the sunset and Alex’s smile and  hearing the barking seals, I was enjoying my moment fully not aware that I was a ticking time bomb. Thank goodness I didn’t collapse on the sidewalk. I really enjoyed my moment (gentle reminder for you to find your moment in your day).

Who would have thought that yesterday would have been what it was? Besides my horrible counts and need for a transfusion, I received the result that my tumor marker was 100 plus points higher. (now 200 plus points in 2 weeks). While I sat getting my blood from Washington DC (on a side note think that the DC blood had bad mojo), I just looked at the paper, paged my doctor, called Jim…and sent text messages to family and friends who had asked the status. What little appetite I had was gone, but I knew what I had to do. What surrounded me at the cancer center were weak bodies withering away (some in the bed, some barely sitting up, all hairless)! The nurses had told me despite my growing cancer, I looked good. I realize that this was their version of good compared to what was outside my door. My chicken recipe nurse reminded me of the power of the mind and not to give in to allowing the cancer to invade my thoughts and spirit. Her reminder was that the mind is a powerful thing. The charge nurse reminded me that my body is miraculous. I shoved my lunch into my mouth, barely chewing and not tasting a bite.
I talked to the pharmacist about the next drugs that I am to take. You see if you reach out to unlikely people like the Hoag mixologist (pharmacist), he can provide you answers and prepare you for what awaits you. You just have to be prepared to hear the answer which I was half way prepared. Fear started creeping into my mind, but I continued to push it out. I come home to feel like I had been hit in the head with a hammer only to wait for my doc and see Alex’s smiling face. My doc responded saying he would call at 7pm.
The partnership between doc and patient is critical. My fight for survival is known, but the reality of a toxic drug barely working is now realized. The risk outweighed the benefit. This is a clear case of how chemo can kill you. The hammering of your body with ineffective toxic drugs eating all your blood and barely eating the cancer is the deciding factor. We must stop this chemo and change to the next idea. The next idea is a drug given Monday to Friday and again another drug the following Monday. Plus, doc wants a scan to see if there is an area to biopsy. Both Jim and I took a tag team approach to tell the doc that I cannot go to UCLA every day. I plead for another option which is Hoag Monday to Friday and UCLA on the once a week. For many options besides the driving, this new idea would not work with me living in LA for the week. He agrees to set to attempt to set this up. What most do not realize which I have said before, going to a cancer center for treatment is difficult once a week. It requires a mental preparedness that is difficult to explain. I always said that I would rather go somewhere else to be treated for cancer. The “closet” is a constant reminder of sickness, many on the pity pot, few smiles, and a poor visual reminder of the future of the disease. When I switched from once a month, to twice a month, to every week, I realized how much strength and determination is required for treatment. Besides being your own advocate, I should have added to my lessons learned,  “get into the right head space for success.”
Night time is always the worst time for any household living with cancer. The fear and the thoughts that were pushed to the back of the mind creep to the front. For each one of us, we all have our methods of coping. Often music helps, quiet helps, laughter helps, deep breaths,but often nothing seems to help. Alex is the usually the first casualty who has tried all his tricks even watching late night animal planet to be left with worry. Our new method of fighting these thoughts is me teaching Alex French. So, we begin with the alphabet and some verbs. The funny sound of French words make him laugh and ease his mind into sleep. Somehow this helps me too. I think back to April 2013 in Waikiki when I had the rising tumor marker which was 300 points higher than I have now. The day after chemo in Waikiki, I hiked to the top of Diamond Head. In July 2012, with a bit less cancer, but horrible hand/foot syndrome, I walked across Olympia and the Parthenon. I did these things before. So, instead of having one of my few panic attacks, I focus on this plus the fact that this last drug was slightly working a teeny tiny bit. The next combo will work too. All I need is somewhat stable disease to enter the trial and continue the journey. I know I can do this. I know it won’t be easy. My mind is a powerful gift and my body continues to surprise us all.
In the early morning hours, I managed to schedule the rest of my blood transfusion and my scan is scheduled for Friday. Next on the list is the Monday to Friday at Hoag. We all know how this local doc is not like my beloved UCLA oncologist who will jump to make things happen for me. I am just another number to her and not a priority. The games begin again, but first a shower and a walk (slow walk) on the beach. The sun is shining with a little fog both in my mind and outside. I remind myself again that I am not a statistic. I can climb any “mountain” that I face with the continued support of my smile patrol, NEGU cheer squad and especially family and friends. Again in the words of a very dear friend, “find your one fun thing today!”

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