Archive for May, 2014

“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.
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some ole photos of my sister and me,  mom, great grandmas, and grandma!