#NEGU: never ever give up!

July 18, 2014

The factory was still the same circus act although a bit improved for me since I had one of the happiest nurses. It was a long day that only once did I have a slight panic and needed to get air. I have to say that they were trying. Small changes happened, but complaints from the nurses center ring were heard. We cannot expect changes to happen overnight. Hey, someone even asked if we had kids?! AND asked how I was! All I know is that I made something happened and I will continue to try to change the factory for the better.

Here are some messages of NEGU from myself and Stuart Scott. Find your sunshine today!

 

A year has passed since my cousin Margie who was an Ecap (exceptional cancer patient) left us

July 13, 2014

I cannot believe it has been a year. It seems like yesterday. It was really the other day when I was telling my factory tale of clinical trial train I heard her voice answer me.

So, in honor of Margie, I wanted to re-post some of her words which I did post in July 2013.

Here are some of her words to me:

“You’re strong and your fighting spirit will take you far. I BELIEVE in you, love you. After you read this you’ll start to see how often God winks at you.”

“Whenever I’ve gotten discouraged or a little blue, I come back to the teachings of this book. (The Triumphant Patient by Greg Anderson)

I believe you’re strong without a doubt. Keep doing whatever you’re doing. You’re amazing!!! I know we’re going to be old ladies talking about this in 30 years as part of our past…just another bump in the road of life. I love you. Margie”

“Here’s another inspirational book (There’s No Place Like Hope, Vicki Girard) I want to share with you, I stumbled upon it and am reading it now. Your wonderful attitude will continue to help you heal and HOPE!!!

There’s a lot of hope to go around, love you Margie”

From her chapter in the book, Faith, hope and healing by Bernie Siegel, Inspiring lessons learned from people living with cancer.

A  New Autumn by Margaret Shane,

“My once idealistic expression is more soulful and serene yet full of hope and excitement…. At times I was discouraged, sad and worried. However I decided early on that it wasn’t going to beat me, and the gifts that have come from it have far outweighed my actual illness… My faith in both god and myself deepened, I felt like a large net was holding me up, orchestrated with angels circling, taking turns to catch my fall, to help me beat back the fire when I felt it circling me. Those angels are my family, friends, fellow cancer survivors, doctors, nurses, and even strangers….Cancer is scary, but not as scary as I thought it would be…I’m sure that stubbornness and a strong will have helped me over the last four years and will continue to do so…. I see the world with different eyes…I’ve had to let go of some left brain thinking, so that I can open up more to trusting my heart and spirit. Not looking at the “shoulds” or “coulds” but what is right and true for me. I’ve had to honor and value myself like never before….fighting this disease has helped me find my passion for living fully again.”

Bernie Siegel’s reflection on Margie’s piece

“Cancer reminds me of water in the way it has the ability to reflect back certain truths to you…your body is aware of how much time you spend fighting versus nurturing yourself… When you nurture your body, mind, and soul, growth and healing occur within you, …So never stop planting and cultivating your seeds of life, though cancer may been seen as compost, remember how it helped Margaret to find her passion for living her life fully again.”

The world has lost a very special warrior, a cancer soul sister, a cousin, a friend, and my hope is today when you see some beauty in the day you say a prayer for all those fighting to survive because that is what Margie would have wanted. Lastly, I hope you find your passion for living your life fully each and every day. Margie always did that and taught me to do the same.

How to be the voice of many

July 10, 2014

commitment*note: except when it comes to providing chairs!

Being a lab rat at the factory, I have the luxury of being a professional cancer patient with a voice to speak for many. Since I have been in other clinical trials and visited many cancers centers especially in So Cal during the 4+ years, I feel that my observations are valid and true. What makes a difference to most cancer patients no matter where they are in the process of treatment is just a little compassion and kindness which goes a long way. This tiny bit of patient centered care is critical to the successful treatment of patients. This includes the staff at the desk when you sign in, the person who takes your blood pressure, the nurses, and any other staff a patient encounters. Last week, I had the opportunity to see an old friend who happens to be the chaplain at both the factory and closet. We laughed as usual and talked about the factory. Now, the factory has the reality of being the picture of what is happening in the world with the increase in the number of cancer patients to treat. I’ve talked before about the infusion center being “sold out” and unable to make an appointment as if I am getting my hair done instead of chemo. There is a fine line of how to treat and care for the growing population of cancer patients while focusing on the individual. UCLA Westwood does have that balance with the nurses taking the extra moments listening, advising, and caring for each patient. The problem with this care is that this often creates delays for other patients. I’m sure this is a difficult thing to manage, but cancer patients require a different type of care. I know moods and attitudes can change the overall health of a patient. A slight pain becomes sharp and unbearable. A slight concern turns into a crisis. A bit of worry turns into a tearful panic attack. Small efforts can make a huge difference. I know I have complained about the loaded question of, “how are you feeling?” When no one asks, it seems that no one cares. I received a call from the factory supervisor. She completely understood what I was saying and assured me that things will change. At first, she questioned my concern regarding the level of care I was getting. This is a puzzling area as I am getting excellent medical care, but missing the human care. She laughed at the way I explained the factory to her even using the words factory and processing.
This brings me to yesterday. After a very long drive on the 405 with 5 accidents. A drive to UCLA is never easy or simple. Plus, in Santa Monica there is the added search and hunt for parking. Jim dropped me off. I entered the waiting area which holds about 50 people and it was full. The level of anxiety was high and faces were filled with worry and concern. Caregivers were checking watches and making comments. I walked to the sign in desk where 3 people sat head down and not one looked up, acknowledged me (or anyone else), and  no words were said by the head downers. I waited a full minute watching the clock tick passed each second hand. I also used the harsh stare as if they could possibly feel my glaring eyes. I gave up and decided to use the restroom in case I was in the DOD (door of death) room as I refused to use that bathroom. When I returned, I noticed the energy hadn’t changed. In fact, the anxiety level had increased and was almost palpable. I decided to keep smiling and tried to make some eye contact. Somehow, I was called and taken back to the standing room only room. My guide explained the sell out crowd. I added it must be a 2fer day or I should have been informed to BYOC (bring my own chair). I scanned the room with a choice of a chair facing the wall and a nicer pod. There was a group of family with a ghostly patient behind me in a wheelchair. I decided to give them the better chair. While I sat, I noticed the energy in this room was even worse. Not one nurse smiling or making eye contact. A nurse in front of me was committing the violation unheard of in Westwood which is using the stool with wheels to wheel herself from patient to patient. Of course, my first thought was that she had an injury which prevented her from standing. Nurses were talking way too loud and yes, most patients weren’t focused on this, but I overheard one nurse say she was going to lose it. I was still trying to figure out who my nurse was. Finally, I caught one nurse smiling and making eye contact.  It was a crazy circus like atmosphere, but not in a positive way. Nurses were huddled behind their station as if they were going to catch something from one of the patients. My nurse arrived on wheels (rolling from the nurses station to my wall facing chair and I had a flash of the movie Wall-e with people on those floating chairs) and never introduced herself, never explained what she was doing. I knew what she was doing, but that wasn’t the point. I asked her what she was doing and explained that I have been doing this for 4 plus years and I like to know what is happening. Her answer was, “I’ve been doing this for 25 years.” Next, she was careless and blood started spraying my chair from my accessed line. She wiped some of it off. I wiped the rest off while waiting. I kept asking questions and asked what tests were ordered. She told me and I responded that one was missing. Wheeling back to the station, she seemed to be having a really bad day or maybe this was the way she “rolls”. I continued to scan the room seeing more patients searching for nurses, caregivers searching for lunch options, and nurses grumbling about everything until I heard them get on the phone to order their lunch. (Were they all on break?) Now, I waited for my results, but could not find the clinical trial person or the doc or my rolling nurse. I made eye contact with a person standing at the nurses station who approached me and happened to be the factory supervisor. I explained the various situations including my circus act rolling nurse. Her jaw dropped and she grabbed my hand and smiled. She promised she would add my new observations to her email which would be sent to higher factory management. I did remind her of the one smiling nurse. I was left to more waiting until I finally interrupted my rolling nurse before I saw her ordering her own lunch which was obviously a big priority. She told me I need to wait for the doctor in a tone which she was saying, “shut up and sit down at your wall facing chair.” At this point, Jim had finished his call and was now standing beside me since there weren’t any chairs to sit. He questioned what was taking so long and the clinical trial person asked, “still feeling the same? Any problems? Okay see you next week.” I was not sure if she wanted the truth, so I answered with a “yes” and “no”. The factory visit was concluded and hoped secretly that my comments could change this factory into a more patient focused factory. I know it would make a difference. I laughed as I read the sign in the factory about commitment.

Clinical trial 101

June 28, 2014

I’m a phase 1 lab rat, guinea pig, hamster…specimen.

Most Phase 1 trial participants are either so sick that they have zero options or in some cases a phase 1 can be a new drug for those who have no evidence of disease. My situation is that the cancer continues to grow while I try to manage the growth along with the side effects from the new drugs. I always put on a good show and look nothing like the rest of the clinical trial groupies, but when every day functions of basic needs get out of balance then I tend to show my true colors of fear, even panic, sadness, anxiety, and much concern.

With the clinical trial process, there are two closets and strangely enough one has a view of the ocean and one faces another building. The first closet is what I call the DTD (door to death). The participants in this room cannot walk without assistance and have that appearance no patient wants to see. Of course, this closet faces the building as if the staff know it doesn’t matter although it should. The second closet faces the ocean and was the place I visited for my long day. Also, the first closet is used for short infusions or blood draws. The rows of seats and pods are just too close together and are too close for my visual imaging or imagining. When feeling as I did full of side effects and cancer growth, I speak the truth. I answer with, “I’m not fine” and see their fear and concern in their eyes. It is not the concern for me as a patient, but fear their trial will be impacted. I get it, but the sights that surrounded me are not motivating and facing the wall of another building brings those walls closer with magnification of all my issues.
Key things to remember and understand when you are in a clinical trial are especially dose escalation:
1. Ask questions, and don’t stop until you get your answer
2. Have someone with you at all times
3. You are a specimen so no one cares about the cancer unless phase 2, communicate if you know things are getting worse. Their focus is drug toxicity.
4. Ask what cell lines are they targeting (Ie: which cancer)
5. Ask what happened to the rats in the lab
6. Ask about the cohort, number of people in each and if drug works can you switch to different arm of trial, and know what your dose is
7. Dose escalation may not mean you will get a higher dose depending on what cohort you are part of.
8. Understand who is part of hierarchy:
Coordinator, project manager, doctor who sees patient, data cruncher, lab “rats”
9. find out if study pays for anything:
parking, meds etc…your insurance may have to pay for drugs, procedures, labs etc…
10. add to your job list a new job of clinical trial true real coordinator: ie pre meds, bandages for port, schedule, meds outside of trial drug since the one who you are introduced to
just makes appointments, your oncologist is the one who knows your history, clinical trial peeps don’t know and really don’t care
11. if trial needs you to get a drug which is offered for cancer, make sure it is covered for yours (ie: if it is not, as I was told at 4pm on a Friday, you pay for it or you don’t get into the study)
KEEP IN MIND:
Understand that you are a guinea pig or hamster or lab rat and NO WHEEL will be provided, forget the sippy bottle of water too. You are on your own. You must do the work. You must ask the questions. You must work with the numerous people to make an appointment, get the drugs plus all the other people you normally make appointments.
Now, since I am a new clinical trial coordinator, I must follow up on my medication confirming dosage and other important information. Also, since the many staff who do their individual jobs on the clinical trial train and who don’t communicate with each other even though I learned they are a very short walk down the hallway, I must now take the answers from what happened with the meds to the real coordinator, communicate the info from the scheduler, and add any info from the riddler who may be the only person who knows what is going on. The riddler continues to pose question after question without any concern for answers which I must find, ask others, and pass this info to the next person. Sound confusing? It is, but don’t let the game get you down as you have access to new exciting drugs which may work!
So, if anyone is wondering why I haven’t done much on any real life activities, you see that the answer is that I’m on the clinical trial train. I am riding this ride with the numerous side effects of drugs along with side effects of cancer growth. I have also been on the nausea cycle. More nausea requires more meds which results in more constipation which is compounded by the existing constipation brought by cancer growth. The key is to keep the nutrition in the body while having the body react as normal as possible. When blinded by nausea, the focus is lost and the goal of every day things go astray.  In this situation, the priority is what most people take for granted, simply eating, drinking, and eliminating. Each step becomes a crisis and must be managed. The more common occurrence is a bowel obstruction, so focus has to remain consistent. All other day to day activities are put aside. This is when a spouse or significant other becomes critical for your every day survival. I’m lucky to have a great support team.
My clinical trial train is weekly visits to UCLA which anyone knows how painful that is, plus it is Santa Monica I need to visit now. My treatment schedule and windows of freedom have become smaller.I am told that this drug combo takes 3 weeks to work, so stay tuned.  Any available window of opportunity that I feel somewhat human, I exit immediately. This really puts into perspective free time and summer has a whole new focus. I will continue to find my sunshine today and every day. I hope you find your sunshine. It is important to find your sunshine!

Look down: the kitchen is a dangerous place even without the sharp objects

June 11, 2014
Note to self, when you are a cancer patient look down where you step because one wrong move you can end up wiping out in your own kitchen. If you decide to wipe out, don’t do it before you are going for an initial visit for a clinical trial. Somehow, I slipped on a piece of plastic, into the oven door, flat on the floor. Blood was dripping down my face and I screamed for Alex who was playing basketball. He came with his friend and both remained calm even though they really wanted an ambulance to come. Thanks to a call to his mom who ran to my house with her hubby, all was assessed and evaluated. We all decided that if I was “normal” maybe we would just use liquid bandaid. Since I have the ole’ special immune system plus all the other issues, it is best to go to the ER. It is nice to have friends in high places who can get you into a room away from the germs in the ER. Poor Jim was called by Alex who told him, “mom fell down, hit her head, blood is everywhere, come home now.” Luckily, we called Jim back after I was iced up, but his heart palpitations continued when he saw my purple swollen face. We all went to the ER where the doc said glue is better than stitches when the skin comes together perfectly. Another adventure outside of days of isolation.
My time of isolation ended to realize that I am in a strange place of time without chemo not by choice and cancer growth continuing. Both things, I cannot do anything about, so I have to enjoy my days as much as possible. With the continual rise of the tumor marker, comes increasing a symptoms from cancer growth. Some symptoms are more glaring than others. Without the ongoing toxicity of chemo, my head seems clearer (able to answer Alex’s questions with somewhat clear mind), but the constant reminder with increased symptoms is difficult to put in the back of my mind. Instead when I awake each morning, I tell myself I am as good as yesterday to do things I want to do and ignore as much of the symptoms as possible. The last reading of the tumor marker put things into a tailspin as a scan had to be scheduled. This was all in an effort to enter the phase 1 clinical trial land as opposed to the wheel of fortune chemo adventure land.   As much as we fake being a doctor, a clinical trial has it’s own language and it helps that my oncologist can speak that language as he has performed countless trials and recently presented results at ASCO in Chicago. So, his involvement was not only necessary but critical. From the moment my scan was done, he was involved so much that he even began to converse with me via text and email with a furious pace that the urgency was felt unlike ever before. He also had his usual sense of calm and reassurance that this opportunity was one that I couldn’t miss. We are again in a different phase that I could never have imagined. I cannot be worried or skeptical or even be upset because this is what I have to deal with. I have to accept what it is for the moment. Is it ideal? Nope.
So, the unfortunate thing of the trial is that it is in Santa Monica which is like Laguna Beach in the summer for parking. After driving 2 hours, then we have the lucky time of finding a spot with a meter for more than 1 hour as we all know that any doc visit can be 2 to 4 hours. We haven’t fully evaluated the entire facility. I have been going to UCLA Westwood for over 4 years, so it is my “home away from home”. Santa Monica is the land of clinical trials and many are phase 1 which does mean for many more than being  a guinea pig. I was one of the few walking into the office. Many had walkers and many had wheelchairs. These faces were beyond anything I have ever seen at chemo. There were some with their own oxygen and many bald women with sunken faces. I tried to ignore the images and ask about important things like where do you get food here. I guess it was a strange question given the audience in this closet. You see if you are on a phase 1 trial, then they need to measure your blood almost every hour for 9 hours. The positive is that this closet has full bright open windows and I heard you can see the ocean.  Another positive is that despite the weekly visits to Santa Monica (we think for only 5 weeks), the drugs are pills. I am queen of managing side effects, so I plan to do the same here to have the FREEDOM from the IV. All in all between my face injury and the day at Santa Monica I am wiped out. Last positive is that until these pills are started, my blood is in the somewhat safe zone. I referred to my blood counts as rock star counts to the clinical trial doc and I think (I know) he thought I was crazy. Hey, once you have hit the zero zone of having no ANC to fight infection, you learn to appreciate the upswing even if it isn’t in the normal range.
I am making the most of each day and always finding my sunshine. I am so thankful to be out of my isolation running into some smiling faces that I have missed seeing for too long! Make the most of your day…summer is almost here, enjoy the late nights full of light!

 

“It can knock me down but I’m gonna be back Strong, down for whatever exceptional and I don’t know how to quit…” Lupe Fiasco Mission

May 24, 2014

What have I learned this week:

* you can always learn something from talking to a new doc
* reality sucks, but often you need a dose to help you make decisions
* crying is okay as long as you start tomorrow without tears
* decisions require a lot of effort and a delicate balance
* focus on what you know now, today

Now most of these lessons I have learned over the course of 4 years, but I had to be reminded again.

Tuesday was a day of frustration and tears. Wednesday, I filled my minutes of freedom outside my house for re-check of CBC to get some opinions from nurses and pharmacists. Each of these professionals took the time to listen and told me truthfully their opinion based on their experience. There is no sugar coating the truth, the reality. This new protocol is in uncharted area. My counts have bottomed out once again and hibernation is key to avoid getting any illness since my precious body cannot fight anything without any white blood cells. The tumor marker continues to rise.

My week started with an adventure to USC. This was to see if I qualify for a trial and get some ideas from anything in the pipeline that would match my needs. After 5 hours plus hours driving, there was nothing for me. I did meet a doc gynonc who was amazed as are most docs with how I look compared to what I have taken and been through. Unfortunately, reviewing my lengthy history brought to the surface a dose of reality that I mostly choose not to face. Besides her comments on having a dangerous broken immune system, I am reminded that a cold could kill. Of course, we gained perspective on phase 1 trials which was helpful. Some phase 1 trials for ovarian are simply phase 1 because they haven’t tried the drug for ovarian, but were successful in other cancers. Some phase 1 trials are just a newer form of an older drug without all the side effects like the now available abraxane vs taxol and xeloda vs 5 FU. (Yes it is called 5FU and has a long name I don’t know how to spell). The last part of this learning curve is cancer stability or living with cancer. This has been something my doc has been attempting to reach me but always listens to me regarding my goal of cancer disappearance and chemo break for more than weeks. Since I have no real options that we know would work, why not stay on this until it really doesn’t work at all. Living on the edge. I do hate the roller coaster ride, but since I am without constant pain then living on the edge is what I must do.

Something can be gained from each meeting of 2nd or third opinions, but coupled with the dose of reality is often a prescription you choose to not take. This led me to my day of tears, but also led me to the conclusion about what I know now. I know now that I am not in constant pain, so I can deal with this ride. I know that I am eating, drinking, and attempting exercise when I can. I know I am not like other patients. I know that I don’t look like other patients. I cannot think about tomorrow, but I can think about what I can do today and be thankful for being alive even if it is in isolation once again. I can also find my sunshine. Watching live stream of Disney24 fireworks and shows as if I am in the park, listening to Alex’s musical concerts, tweeting awareness from worldwide messages, and reminding myself again of what I know are the sunshine for the moment.

FIND YOUR SUNSHINE TODAY!

Gotta spread the news about Lupe Fiasco’s song Mission for Stand Up 2 Cancer-explicit lyrics

Brownie Cookie Day got me an upgrade out of the room of darkness

May 15, 2014
Thanks to all my bakers! Want you to know the treats got me out of the room of darkness, provided hope to nurses and patients, and made me realize that my stability is not so bad. Besides the hot Weds with horrible traffic including 4 accidents on the 405, we managed to get to UCLA  not too late. I was armed with an overload of cookies, brownies of all sizes, and other treats. It seemed like a lot. If you could see the smiles I get from delivery, you could see the importance of how a cookie changes lives and attitudes. The first area was packed and filled with anxious faces wondering about my delivery, so it must have stopped them from their thoughts of fear and the word of cancer. The infusion area was very very quiet. I met a patient who commented that she always sees me here and she complained that most of the people she knew were “gone” and she expressed her frustration of continuing her treatments. I didn’t add my own saga, but listened. She told me she had driven from San Diego. Yikes and we were complaining about our drive. She slumped in the chair awaiting her turn. I continued my happy face talk with discussion about brownies for 10 minutes. I also asked about the new employee who looked like he was Alex’s age. My nerves caused me to say anything to get a laugh. I was called by my favorite first nurse who quickly took me along with the office manager who also escorted us to a private room. These rooms are usually filled with the “famous” who often have an entourage and body guards. This all proves that you can’t get chemo at home.  This possibly proves that over 4 years of treatment gets you an upgrade if available. What I didn’t know until my first bathroom visit was that my team of nurses were helping me to avoid the room of darkness. I am not talking about the light from the windows, but each chair/pod was filled with faces of gray, skeletons, hopeless, and looking like their days were numbered. To offset my nerves, I had more of a bounce in my step combined with my cute outfit compared to the PJs and baldness everywhere. I quickly scanned for a familiar face or an attempt to change the hopeless look to a halfway smile. No success, so I bounced back to my private room. On the way passing the nurses stations, I greeted my team with a smile. When I returned from my bathroom visit, I asked Jim if I ever looked like that. I did have some moments, but I always wore makeup, drew on eyebrows (I continue this process daily), wore hair, and happy outfits. Plus, I always smiled even if in pain. When my nurse returned with my blood counts which were pretty good this time, I said, “what is with all those sick people out there? Did I ever look like that?” She responded that she felt that I never looked like that even when having an allergic reaction. When my doc entered, I asked him the same question and commented that I know I have cancer, but “what’s with the room of darkness?” He smiled. I asked him if I get a discount or commission based on all the referrals I give him. He almost laughed again. I know he along with all the nurses are concerned with my symptoms, but I reassured him that as long as the horrible constant pain was not there, I was good to go. We talked about upcoming trials, ASCO meeting in 2 weeks, and more ideas with undetermined dates of arrival. I must stay the course even if this is a ton of work to keep cancer stable. My tumor marker remains stable, but again it is not higher. We did discuss this combo which is very new way of demethylating agents causing changes in DNA to make drugs work that didn’t work. The next evolution is a new similar drug with immunotherapy to do the same thing. I wondered if it was me who caused this idea or just reassured the idea. The idea needs major funding since trials are expensive and so the story goes. My docs face did bring his frustration back to the other trial which pulled the slots for ovarian. So, I know I have to continue to do what I can to spread awareness and press for pharm to fund more treatments.

His reaction and comments about the lack of advocacy caused me to try another angle of getting the word out. So, I went on twitter (@jtriestm). I am definitely no expert, but found the re-tweeting easy. I also found gyn oncologists, researchers, and many survivors with the desire to get the word out to spread awareness, find new drugs, and express ideas. If any of you are experts, just email me some tips because I have little time or especially focus. I did see that many onc docs use twitter to chat with each other, so I follow them in hopes of seeing some news which is not yet newsworthy, but may give us more ideas for treatments. I did participate in a chat with these docs, patients, organizations for cancer research on parenting with cancer. Some of the comments were pretty accurate like parenting is already difficult enough without having a chronic illness. I had to add my tweet about the importance of getting your child’s school involved both teachers, principal, office staff, and counselors. As Alex says always, “without the school’s help, his school life would be a lot worse.” Thanks again goes to the teachers, staff, and principals! It is also interesting to note that many immunologists are on twitter too sharing their medical speak with others across the world. Again, one more way to find answers. Plus, the big ASCO14 conference is coming in 2 weeks to Chicago where the oncologists/pharm talk about upcoming treatments, success/failures in trials, etc…you can follow them on twitter #ASCO14 which leads you to more people and tweets and so on. The only message board I follow is http://www.inspire.com/groups/ovarian-cancer-national-alliance/ but Inspire has other message boards for other illness. (@OCNA) The message board is difficult because each and every day, Ovarian wins, a patient loses. I usually scan for questions I can answer and post a response. There are families, parents, children, patients from all over the world. I am still a scanner and now without a lot of focus, but I do what I can do.
Back to my appreciation to all my bakers and supporters, without your help I could have been in the room of darkness. Surrounded by that for 5 hours does impact your attitude even if you try really hard. So, I hope you see how far a cookie goes to help a cancer patient. It isn’t just a cookie. Without my giant team of cheerleaders, a stable test result could turn into a cry for something better for that day. Instead, I am reminded that the room of darkness is a possibility and to be thankful for all my sunshine. So, I continue my day of fog, tweeting, and skimming. Having found my sunshine yesterday of a cookie and brownie, I know I will find it today again. I hope you find yours. From my tweet from yesterday, “Let it GO! Don’t sweat the small stuff, prioritize what is important for the day, for the moment, there is much unknown, so try acceptance.”

World Ovarian Cancer Day: spread the word

May 8, 2014

May 8 is World Ovarian Cancer day and my goal for the day is to spread awareness with key facts and symptoms. Being a 4 year patient living with cancer, I want to also share the list of treatments I have had and the main list of drugs I use for coping with nausea. Lastly, I will include my tips for living with cancer. Being online during many days at chemo, I have had contact with cancer patients all over the world. Many cancer patients did not have the knowledge or even access to the right drugs for coping with  nausea (#1 side effect of chemo drugs). Sadly, many patients are told to go home to be on hospice after first or second line treatment because their doctor lacks the knowledge to think outside the box (or outside the square as they say in some countries) and try different chemo combos. In light of a recent NY Times article where a doctor’s wife dies of cancer, it convinced me of the importance of my rule #1: be your own advocate. This article seems to promote the wrong message based solely on statistics that there is no point in doing more chemo since it causes more side effects/chemo resistant cells. Since statistically there isn’t anything gained in progression free survival, this article promotes the do nothing idea and fails to recognize that the women who are wives, mothers, sisters, friends, aunts, grandmothers are more than just a number. The women I hear from want to live and want options. Many feel that they are not part of the statistics. My hope is that this post can be used to give to doctors as a talking point. My other hope is that my tips which continue to help me live with cancer may help others. 

5 Key Facts

1. All women are at risk of ovarian cancer
2. Awareness of the early warning signs of the disease could save lives
3. Diagnosis at an early stage vastly improves a woman’s chance of survival
4. Ovarian cancer is often diagnosed at a late stage.
5. Many women mistakenly believe the cervical smear test (Pap test) will detect ovarian cancer

 

Symptoms of ovarian cancer can often be confused with other less serious conditions such as gastrointestinal disorders. Symptoms include:

• Increased abdominal size / persistent bloating (not bloating that comes and goes)
• Difficulty eating/feeling full quickly
• Abdominal or pelvic pain
• Needing to pass urine more urgently or more frequently
List of chemo combo/treatments I have done over the past 4 years
1. carbo/taxol/avastin
2. gemzar/carbo
3. cvac (dendritic vaccine trial)
4. topotecan
5. doxil
6. doxil plus afinitor
7. alimta, carbo, avastin
8. alimta, carbo only (bad reaction to avastin)
9. alimta, oxaliplatin (allergic to carbo now)
10. sorafenib
11. another trial called cdk1
12. weekly low dose abraxane, with votrient
13. weekly low dose abraxane, gemzar
14. weekly low dose oxaliplatin/gemzar
15. xeloda/cyclophosphamide
16. ixempra/irinotecan weekly, low dose
17. Single dose iXempra, could not tolerate irinotecan
18. Low dose navelbine and epirubicin
19. Decitabine (day 1 to 5), low dose Cisplatin day 8
20. decitabine (day 1 to 5), oxaliplatin day 8
21. decitabine day 1 to 5, abraxane 125mg, gemzar 400 mg
Side effect of chemo: Nausea 
Don’t chase your nausea, it’s a race that will end in the bathroom.
Day before chemo: you may be taking steroids called decadron (dose can be 5mg to 10mg)
Day of chemo:
You can get drugs in your IV called pre-meds before getting chemo like: decadron, Benadryl, aloxi, and emend or Zofran
NOTE: there are also emend pill packs when you take one pill before chemo starts, and one pill for the next 2 days
About Zofran: Zofran is the “go to” drug, but if it isn’t working for you (I take 4 mg so I can add more during the day)
Other drugs for nausea: kitral (oral), Sancuso patch, Reglan (can be taken with Zofran and doesn’t cause constipation like most anti nausea pills)
TIP: if you were pregnant and extremely nauseous or get sea sick, you may require more anti nausea drugs. Don’t accept being nauseous!
Recommendations in order of preference: Reglan!
Recommendations in order for treating little nausea to bringing out the big guns: Zofran, Aloxi in IV, Emend (can be taken on same day with Aloxi), and Sancuso patch. (Reglan can be added in the mix) (p.s. compazine and ativan can work, but just did not work for me)
NOTE: Sancuso patch is expensive but insurance will cover it if all other meds failed. Either ask your docs office to help or call a patient advocate at your insurance.
Lessons learned living with cancer
“everything you always wanted to know about SURVIVING cancer, but are afraid to ask!
 
1. Be your own advocate BYOA
2 mistakes happen
3. Take control of your treatment TCT
4. Drug dosage based on 200lb man, you may need to adjust the dosage
5. Sometimes there are no answers
6. Living with the unknown, part of the journey, try to accept it and live in the present
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, and be specific!
12 for you to succeed, you can’t do this alone, this journey requires you to get help,
13. Take notes and have someone else present, 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.
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
21. Get in the right head space to get chemo, don’t let the visual image crowd your brain with negativity, surround yourself with positivity and stay in your happy place. It requires a lot of energy, but you can sleep later.
22. Know your history, review your imaging, learn the lingo, talk to a radiologist who can translate and become a fake doctor. A good radiology report requires a skilled technician and a skilled radiologist with an attention to all details especially the small ones.  A second glance can make the difference in starting or stopping a treatment or getting into a clinical trial.
23. Knowledge is power. You may not get every side effect of a drug, but it is better to be prepared.
24. Connect with others and stay connected with those who care about you and give you joy and happiness.
25. Take a walk even if it is for 5 minutes.The air can clear your head and mind from the fog of treatment or fear of the unknown.

Mother’s week

May 6, 2014

In celebration of mothers everywhere, I have to look back at the mundane tasks which many a moms complain. Even though last week started slow since my counts were not that great, I ended the week on a high note. I had the privilege of taking Alex to his piano lesson. His piano teacher invited me into the lesson. Alex announced he would play this piece for me which I cannot recall the name. The beautiful music played by my beautiful son brought me to tears. I have either been sleeping through his playing at home or never heard this piece played in its entirety. He played this all by memory which always impresses me especially since I have zero musical talent. His focus and the way his hands moved so fast across the keys made me smile and filled my heart with so much pride and joy. I have missed these moments for months.

Next came a trip to Target where I encountered the dearest positive sunshine friend who could really appreciate the joy of this small adventure. Her smile and words always give me such great energy. I am lucky to have a lot of sunshine friends, but I consider her queen of sunshine since the day I first met her when Alex was in 1st grade! Moments with a great friend is something to cherish and I know this better than most. Even though I am not the best shopper these days, I am thrilled to know that Target can still provide diversions from the cancer job. My message is simple. As you chauffeur your kids from activity to activity, take a moment to peak on their progress and take joy in these amazing people you have brought into this world. When you have your list in hand from store to store, stop and take 5 minutes for a friend. He/she could be the best part of your day. When you don’t encounter a friend at the market, take a second to ask the cashier how his day is or smile at the person behind you in line. Stop checking your phone unless your child’s school is calling. Your phone can wait. Life is happening around you and you are super mom. You do things every day and multiple tasks at a time. Besides taking time for yourself, make time for others.
My next adventure came on Saturday with a trip to San Diego. I laugh when I think back on how much we did. First, we went for a seafood lunch at the harbor area. Then, we went to the maritime museum which included an hour boat ride on the harbor and tours of 2 submarines, 2 tall ships, and two steam boat. The submarines were an adventure in climbing in small spaces. Then, we went to Balboa Park for an Imax movie since it was still hot. We walked around a little and heard some type of marching band competition which was fun. We had the not so brilliant idea to go to Old Town (not smart on Cinco de Mayo weekend) and ended up going to La Jolla. La Jolla was an adventure in finding a burger place which does not serve fries fried in peanut oil, so we could avoid a trip to the hospital. Lucky for Alex, he reads small print. We had our burger and walked to see the sunset. A perfect day and the most fun since our cruise was had by all. Glad we decided to avoid knife playing and sword fighting since I did not know my platelets were so low. Yes, my hemoglobin was low too, but I thank my wonderful body which adjusts perfectly in the ocean air. Who said you need a lot of red blood cells to walk around all day?
On a boring note, the cancer job continues. I had a bit of a fiasco at chemo today when the local doc didn’t put the pieces together and cancelled my chemo because of low platelets. This doc doesn’t fully understand the drugs what they do and the drugs I am getting do not eat the platelets. The last two drugs which I had on the 23rd did, so I had to call my UCLA doc. He called me back and he called the local doc and show began. Of course, I was not in the mood. I was not in the mood for the whining guy in the next room and FYI the curtain that separates us did nothing. Then, the other patient called “you know what you should do” entered to sit next to me.  Now, contrary to the decisions that I make on what I choose to do, the options which she presented of drinking kale juice and a diet of just beans were not of high priority as my choice for cancer treatment. She continued to “you know what you should do” until I fired back with the 4 years of me being nominated as chemo poster patient of the month. I put on my headphones as I heard her last comment that I shouldn’t eat any fruit. I pulled out my organic apple and chomped away. Don’t get me wrong, I am all for information, but unless I asked for the magic wand of cancer cures, I doubt it is high quantities of beans and kale. Plus, with my bad stomach, I would rather not kill my boys with gaseous fumes from such a combo each day. Granted, if some major institution came out with a study of thousands of women eating this and getting cured, I guess my boys would need to get some gas masks.
Lastly, I would like to again thank all the wonderful nurses who really care and go out of their way to listen to me and understand me. Today, I was hoping that besides my words conveying my frustration and my facial expressions telling this story that mind reading would work. There are some magical nurses who have the mind reading down where I can say little and in the words of a couple of amazing nurses, “I can see it in your eyes. Your words are saying one thing and your eyes say another.” Oh well, no mind reading today this nurse chose to just check the box where my hemoglobin can be blamed for my lack of energy. Back to my headphones, I chose to look forward to my nap.
With blood counts and tumor marker not cooperating, I choose to remind myself how lucky I am. I am so lucky to have a great family and friends who continue to provide me with unconditional cheerleader support. Although I do whine occasionally and do not understand the tween/teen brain, I do stop and appreciate the moments. My rules are the same. Find the sunshine in every day, you can find it even if it ends up being that cup of coffee you had for breakfast. Stay in the moment as today is what we have. Try to laugh as much as you can because it is way better than crying. There are times when you need to cry, but do it and move on. The pity pot is not a place to stay. Look around you, there are so many who are less fortunate than yourself. Remember all those who are no longer here to make you laugh, make you smile, hold your hand, and think good thoughts of the memories you made with them. Again, back to the sunshine…there continues to be much unknown, so I focus on all I know which is the love that surrounds me and keeps me motivated for today and tomorrow. I asked Alex for a special Mother’s week. I had my first concert tonight of his “greatest hits”. Hoping you find your sunshine today. Celebrate yourself, your mom, your mom’s mom, your sisters who are moms, your friends who are moms, and appreciate these wonderful women in your life.
041972suejoanbeach 091970suejoan 121972sarahlaraine 081961engage3
some ole photos of my sister and me,  mom, great grandmas, and grandma!

Birthday Wishes for 2014

April 25, 2014

While I consider every day being here a celebration, I do have some birthday wishes for 2014!

Birthday wishes 2014

1. Less stress for all my family
2. No more discomfort or pain
3. Cancer stability or elimination
4. More plan b’s,, plan c’s
5. Blood count stability
6. Plan a summer Maui vacation
7. More treatment options for ovarian cancer patients
8. Getting more attention for ovarian cancer treatments and to make positive changes in the treatment of ovarian cancer
9. Having chemo at a beach or location of your choice-traveling chemo
10. Heparin flush with added mint options so you don’t have horrible after taste
11. A break from chemo for more than one week and not due to blood issues, but cancer elimination
12. Make food my friend
13. Stay strong even when today seems unbearable and impossible: NEGU
14. Hoping that Chemo by proxy which impacts those close to you will be discontinued soon
15. Never forget what is important
16. Continue to hope that those you know will understand the importance of having your priorities in the right order and those who don’t understand will maybe think twice
17. Obsession with toilet paper and gasX will end
18. Hair growth in the right places!
19. Clone copies of the best nurses and the others go somewhere else
20. Pre meds for chemo with a massage chair
21. No more fat pants due to cancer growth and just due to real fat growth
22. While getting Benadryl pre med and high dose steroids, please don’t let me fall asleep with my mouth open , snore like the sound of a chain saw, and drool down the front of my shirt
23 just like a server who checks on your meal when you put a giant bite of food in your mouth, please no doctor visits during pre meds…because I can’t stop eye twitching like constant winking and have to focus on keeping my eyes open instead of listening of what doc is saying….let his voice stop sounding like Charlie browns teacher, “wah, wah, wah, wah”
24. In a perfect world, the politics of drug development would stop and the cures of many cancers would begin
25. Continue to live every day to the fullest and finding some sunshine each and every day.
26. Every day when I check the message boards, I will stop seeing the posts of fellow patients dying from ovarian cancer and more living with cancer or even having their cancer go away for good.

Motto of the month: no matter how tall the mountain it cannot block out the sun!

“The most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention…. A loving silence often has far more power to heal and to connect than the most well-intentioned words. ”
― Rachel Naomi Remen


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