Archive for August, 2013

The Race Continues…

August 31, 2013

Big Sur Summer 2013

What a wonderful road trip to Monterey. I bet you are wondering how I can have such a positive outlook after several boulder rocks hit our windshield on the 5 fwy enroute to Monterey. The windshield protected me from a massive head injury, so a big thanks goes to the damaged windshield. It did seem odd that this would happen to us. Even stranger was the candid camera moments that happened after check in. Had anyone checked this room after the last guest checked out? The screen door was ripped as if someone walked through it and the air condition was broken and spewed hot air so that the temp was over 85 in our room. Oh, we also could not get foam pillows and I’m horribly allergic to feathers. After engineer after engineer checked the air condition and fixed and fixed again, it was determined to be broken. Only after approaching midnight did I begin to cry a bit and then decide to just pass out with my wig on. Jim and the engineer continued to work on the air condition while I slept. Who knew what time Jim told me to take my wig off and I responded by telling him I needed a hat. I do wonder at these moments that why doesn’t this happen to someone else. Jim and I do battle every day with my cancer survival, so why did we need to do battle over a room which should come with normal functionality.

We managed to have a great time visiting the Monterey aquarium, driving to Big Sur, eating at a poisonous restaurant, seeing Hearst castle, eating in Cambria, driving 17 mile drive, eating in Carmel (along with brief shopping in Carmel), eating in Monterey’s fisherman’s wharf, and driving back home. There is something to be said for trapping your tween in a car. Alex managed to hear about my growing up, learning French,my travels with my parents and sister, and some other fun tales. This prompted Alex to want to learn French, but I think he was motivated by our recent visit from my club med dear friends. (it was just like we saw each other yesterday! the best kind of friendship!) Alex has such a great ear for music that language seems to be easy. It also comes in handy for timeshare sales people or other people selling things you don’t want, you just respond with some French phrases and people get very confused.
With all this time, my husband rock star realized that the window is growing smaller to change my dose of chemo. Of course, without this constant planning and thinking, it would have been a problem since my tumor marker is on the rise. With the double dose, the double the side effects make me cranky and nauseous. The whole thing is frustrating and annoying especially when my rock star realizes that Monday is a holiday and why would I want to continue with double the dose if the double “shot” wasn’t working. We go into overdrive and make immediate plans. Tuesday I make a blood draw appointment which precedes Weds chemo. Then, we start with our hypothetical plan: if the number is higher plan A then we need a plan B and if number is the same or lower, we have a plan. It is all confusing, but the window is so small to prevent the cancer taking off again. I would rather be ahead of the plan, but it always seems that we are chasing the plan. Higher or lower, it is all a bit scary.  I was just hoping lower so that I have more time on this treatment. Each time I use up an option, it makes the race a bit scarier. I do have some options to try and now lucky to juggle the possibility for the trial. The trial takes 2 more weeks to get the tissue result back and now with the holiday, my 2 weeks seem to be longer. This is all one big juggle and one big game of chemo roulette. I was never much of a gambler until now. You have to make some educated guesses based on what we do know and lessons learned. You can never “play it safe” when it comes to cancer. You can never put your life in someone else’s hands (after all it is YOUR life).  You cannot just watch things happen, you have to be part of the plan. If we didn’t take things into our own hands, then I would have been in another state of crisis with the tumor marker rising faster than the drug is killing the cancer. Right now, the drug is still trying to work, but is having difficulty. It is the little engine that could. I think I can, I think I can. I know I can. I know this is what I have to do. It is just annoying that when you have moments of freedom from the cancer job, they fly by. The message is clear as I always say, “Seize the day, live in the now”. There is only TODAY. I am constantly reminded of that, so I really value the few moments between all the cancer crap. I do think of tomorrow and I do make plans for things to look forward to. I have to do that because if I get caught up in the monotony of the chemo cancer routine, it is a bit overwhelming. There is a delicate balance. When walking the tightrope of living with cancer, you have to find the balance and enjoy the day. I am trying even though I am in chemo land full of nausea and cloudiness. Double the dose equals double the “fun”. Enjoy the last days of summer and find your moments. I know you will be happy you did!
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“Yesterday is a dream. Tomorrow but a vision. But today well lived makes every yesterday a dream of happiness, and every tomorrow a vision of hope. Look well, therefore to this day.” Sanskrit proverb

August 18, 2013

Even thinking briefly about chemo triggers a bad taste in my mouth (seriously!).  My blood count squeezed by so that I could get my chemo without a special permission. I am still drinking my chicken bone broth weekly, so I refuse to stop since my platelets are at a decent number. It was the only thing I changed. My tumor marker is confusing as always. We continue to gamble with these numbers while having a plan in our back pocket. I am secretly doing my tambourine dance in hope of no change until school starts. I mean how much can one boy take seeing his mom in crazy chemo land during his summer break.

I forgot if I wrote about City of Hope. I took the magic blood test to see if I would qualify for the trial. It is such a small chance since they are looking at a marker on your t cell which only 10% of cancer patients have. It is exciting stuff which is such a great approach that genetically alters your tcells instead of killing all cells with toxic chemo. It seems like the future of cancer treatment, but who knows how long it will all take for the FDA to approve and the world to change their view of one size fits all chemo treatment. We didn’t mind the drive too much. Even though it is about the same mileage to City of Hope and UCLA, it is so much better to avoid the 405 at Westwood. YIKES! It is just always traffic o rama no matter what time you go.

While I was at chemo, I told Alex about a website that grants wishes to ovarian cancer patients. You are supposed to create a video, so Alex created a “rap”. I read it to the nurses at Hoag and patients too. They all loved it. Hope you enjoy it too!

In the subject of “too busy”, I have to get on my soap box . I need to tell you if I can find some moments, you can too. It is always surprising to see how busy everyone is. I know how it was and know how it is. You should stop for a second and say to yourself (really say to yourself in your head), “is what I am doing important or more important than”………..You can fill in the blank. Is it more important to clean your kitchen than to talk to a friend for 4 minutes, listen to your kids for 2 minutes, stop and smell the flowers, share a kind moment with a stranger, reach out and think of someone else, or just plain ole’ stop and take a deep breath (just one or 2). Honestly, I have to do this and scale back on my crazy motivation for cleaning or organizing. I have learned that the more I get crazy, I make my family crazy too. The more I enjoy every moment, they enjoy every moment too. Now, there are some bumps while living with a tween who thinks he is all that and a bag of chips every so often. I love my moments with each and every person. I really hope if you have come to know and understand me more with my living with cancer that you can really find your sunshine in your day. I really hope that you are not too busy for what is truly important. I really can tell you it is a much better way to live. There is no re-do moment on the day, hour, minute, so why not live in the present and enjoy. We never know about tomorrow, but we know about the now and today. Please don’t let your moments slip away.

We had a special Friday with visitors and fun. Saturday we went to the food bank to take all the 450 books to them and found their shelves empty. We brought a bag of the most items needed thinking it was just like old times when we were just adding to the pile. Alex and I sadly realized that our 6 boxes of cereal would go to the first 6 families on Monday. Then, there would not be any more cereal until they got some donations. They told us how much the books would mean to the children especially the condition which are almost brand new. (“what a treat!”) They told us they have never been in this situation before school starts.  I have never seen it like this since I have been taking Alex there when he was about 5 or 6 years old. We have seen 1/2 empty shelves in the Spring when school is almost out, but that is it. So, I ask you to visit your local food bank, make a donation, clean out your pantry, buy some extra pasta or cereal, and drop by South County Outreach (or a food bank near you).  As Alex keeps saying to me over and over during the weekend, he cannot imagine not having breakfast or not having a lunch to take to school.

http://www.sco-oc.org/

Food Pantry & Program Offices
26776 Vista Terrace
Lake Forest, CA 92630
Phone: 949-380-8144
Fax: 949-380-3798
Hours of Operation:
Monday-Friday 9am-3:30pm
First Saturday of each Month 9am-12:00pm

Olivia Pham for special time drop off olivia@sco-oc.org

Marlene Ford for organizing your own food drive, a truck will pick up your items,

mford@sco-oc.org

Even though the beach was cloudy today, we found a lot of sunshine just being together. I hope you find your sunshine too!

 

Kakhexia: Greek for bad condition and an episode of ER and Breaking Bad

August 8, 2013

Arriving at the Hoag cancer center, we were greeted by an ambulance, several paramedics, and a fire truck. This could not be good. Jim and I walked into the waiting room. I scanned the faces that looked fearful on the verge of tears. The daughter of one patient explained to me that the center called 911 and it took 7 minutes to get here. I feared it was someone I knew. This daughter told me it was an Asian person who they knew had a DNR. Once I scanned the faces again, I began my comedy nervosa and started this very awkward routine of cancer comedy to try to make the horrified faces laugh. I succeeded, but have no idea of what I was saying. Jim wanted to avoid the car wreck of the patient on the gurney, so he left and encouraged me to do the same. I refused as I didn’t want to leave my fellow patients alone. Instead, we all had to see the “car wreck” and the ancient man who had already left his body, but the paramedics were continuing CPR. Jim timed his return horribly and ran right into the gurney. It was like being in an episode of ER except this was real. I was already in a fragile state when I went to my room. Then, I received a text from another cancer patient friend who told me the fight was over. I have to respect the decisions of other patients to have their own journey, but it isn’t easy when I believe the opposite. This text coupled by the real ER visit was too much; I shed a few tears and moved on.

Of course, this episode wasn’t over and then a new real episode of Breaking Bad began. This day couldn’t have gotten stranger. Homeless cancer patient with a “former” crack addict pregnant daughter with a possible crack baby began their story. Are you kidding me? I couldn’t get out of there fast enough, but I had to talk to my nurses about new chemo they were administering and about cachexia.

My nurse explained the delicate balance of winning with cachexia. As she said, there is a lot to throw at cachexia, but a patient has to be strong both in mind and body. Often, the body has had too much. I hate seeing cachexia. I hate the skeleton face and body. This is a look I was familiar with before I had cancer. Seeing a relative with cachexia, I didn’t want to know the severity of his condition or face of reality of what was to come for him. So, recently when faced with seeing cachexia again, I visit a place that I don’t want to be that is pure fear. I always said that living with cancer is walking the tightrope of life. Mistakes can happen and when consumed with pain, you are unable to see what is really going on. This is why I am so grateful for my rock star husband, family, friends, doctors, nurses, and strangers who go the extra mile to ensure I remain on the tightrope.

I think cachexia is worth a mention since this is the reason for most cancer patients looking like a skeleton. I was on the verge of this several times. I recall several conversations with acquaintances who commented about how great I looked. Our society is very warped as I was at my thinnest below 100 lbs. What I do remember is that a meeting with a doctor encouraged me to take digestive enzymes so my body could absorb the nutrients I was attempting to eat. He also encouraged me told me about the power of the mind and power of being positive to give me strength.This doctor is not an oncologist, but a doctor who admitted that cancer was not his expertise, but he could help me with what he knew and what he didn’t, he would ask others. I also remember my husband and neighbors bringing me 1500 calorie smoothies. There was the owner of the smoothie shop who called other franchises located near hospitals to see if this concoction was the best one for weight gain with the right nutrients. I couldn’t eat a lot, but I ate often. I ate tablespoons of food, closed my eyes to eat, and slowly drank the caloric smoothie. I avoided the percentage of those who fall to cachexia. It takes a village to help someone living with cancer.

I know I am a pain in the butt. I know I say, “no” when I mean “yes.” I often refuse because the pain has consumed me. I often have my vision clouded by wanting to avoid the reality. I often am slapped in the face with the reality when I go to the cancer center. I am the only cancer patient who would prefer infusions anywhere but a cancer center. Being treated at a cancer center, I am reminded of the delicate balance, the harsh reality of the disease, and how things can change in a moment’s notice. This is why I do what I do when I can do it. I was told that my tumor marker is in a holding pattern. This doesn’t mean we are in a holding pattern. We will be going to City of Hope to see if I qualify for a vaccine trial, but I need to have a certain antigen for this to work. So, I will see what happens. The race continues. The reality TV show has ended for now.

http://en.wikipedia.org/wiki/Cachexia

50% of cancer patients suffer from cachexia

22 to 40% die of cachexia

Cachexia:

n

(Medicine / Pathology) a generally weakened condition of body or mind resulting from any debilitating chronic disease

[from Late Latin from Greek kakhexia, from kakos bad + hexis condition, habit]

cachectic  [kəˈkɛktɪk] adj

 

“A day without laughter is a day wasted.” Charlie Chaplin

August 8, 2013

 

 

 

 

 

IMG_20130709_065126_047 IMG_20130709_065155_024

 

 

Besides being a great source of humor for my boys between having old man comb over hair and no eyebrows, I find the daily laugh beyond hysterical. Got to laugh at this…just too weird to cry about. It also helps having lost my hair so often that I am used to the odd look. So, maybe it is weird to plot against Alex since he can’t see in the morning by drawing on zig zag lined eyebrows and waking him up. Got to have some fun for the tween behavior he has inflicted upon us daily! Deep breaths for tween attitudes!

Many of you recall my online shopping problem. My mom reminded me of the problem when she saw a top I was wearing was the one I bought in duplicate. Well, the forces that surround my online shopping problem thought they brought an end to my online shopping habit. Walmart.com was hacked and so, thank goodness for my fraud alerts on my credit card company, I was notified immediately of the problem. Unfortunately, it took 40 minutes for Walmart.com to delete my account. I tried to accelerate the resolution by pulling out my cancer card. (no such luck) Reminder to everyone, change your passwords often and don’t use anything personal. Try fruits, vegetables, random toys with number combinations will help to avoid a “breach” in your online shopping experience. Also, fraud alerts are a great way of monitoring your spending especially when you have chemo brain and don’t remember what you bought yesterday or even an hour ago.

With the recent passing of my cousin, the reality of finishing my “in case of emergency” stuff became a high priority. I met with my Rabbi and had an honest discussion about the soul, organ donation, and mitzvah projects. Yes, it is a random mix of topics, but I wanted to understand more about what Judaism says in combination with how I was raised and my own beliefs. It is good to know that all is aligned. Also, forgive the morbidity of the topic, but once you are in Anatomy and physiology class, the cadaver part is something you will never forget. Besides the desecration of the body, I am not into the donation of the body to science. Plus, there are only so many good parts when your body is full of cancer. Okay, enough said. I only visit this “island” very rarely, but it needs to be done. Your spouse and family should know and understand your wishes. Talk about it once and then, put it away. I also wanted to go through my “stuff” and make a list of what to give to whom. Yes, I know it all sounds horrible, but it is like a check list for me and I am all about lists and making things easier. This is in no way meaning that I have stopped fighting, but only makes me fight harder to survive. There are no other paths for me except to fight, fight, fight.

On a side note, when reflecting upon who I am, I realize that I have always been about others and giving back. My dad has always taught me to treat everyone you meet how you would like to be treated. When talking to my sister, Sue about the Maccabi games (a Jewish type of athletic and arts games for kids ages 13 to 17 from around the world) I decided that on my one good day, I wanted to be a part of it. I decided to help with the community service aspect which involves the teens with giving back to different organizations in the OC. The women who organized this part reminded me of my old life before cancer when I was organizing PTA events especially the book fair. It was nice to be told what to do. I set up different tables with craft activities. The kids visiting from low income area of the OC would be assigned to the athletes to visit each project. Then, I organized my own project which was to decorate a frame. Of course, there are entitled teens even across the ocean, but there are a lot of special teens who loved giving back and interacting with these kids. I talked to different kids who lit up when we talked about math. Two boys who were going into 7t h grade were doing high school math. They were so proud to talk about it and asked me several times if this activity was free. Many of these children also asked me if the snacks were free and explained that they always have to pay for snacks at their camp. The conversations were rewarding and the time was well spent. When I was cleaning up, five kids came over to thank me and tell me this day was the best day of their summer.  I wanted to tell them I loved it just as much. It is so rewarding to give back and forget for a moment about my cancer job. Even better was a chance to see my niece, Sofia in her element and talk with her.

Alex participated in free trumpet lessons in 5th grade from a foundation organized by a wonderful couple who wanted to have children who don’t have experience with instruments to get free lessons as well as free concerts and meetings with musicians. This began Alex’s love of trumpet playing. Even though his band teacher almost squashed this love, Alex continued this summer with those special experiences to continue his playing. Recently the husband of this wonderful giving couple passed away. Alex and I were interviewed by the OC Register about this man. I was trying not to laugh at Alex’s comments. He decided to send the wife a sympathy card which he created.  This version of a pop up sympathy card had a trumpet and drawings of music.  Yesterday, I came home to have received a phone call from the wife of the husband who just passed away. She is a cancer survivor among other things. She really wanted to know how I was doing and thank Alex for the card. She shared some very special moments and I felt so honored to talk with her and knowing that Alex’s card really touched her. You never know who will come into your life and have such a major impact to your family or your child. I love seeing Alex’s passion for music grow and his enjoyment of playing the trumpet and piano.

I decided to continue to laugh throughout the day even including some torture to Jim without any eyebrows.

 

Thanks to something called the mind-body connection, the simple act of laughing can tell your brain to produce chemicals that:

  • Lower your risk for heart attacks.
  • Increase your blood circulation.
  • Help your heart work better and pump more evenly.
  • Boost your body’s immune system to help you fight off infection.
  • Increase your deep breathing, which relaxes your muscles, gives you more energy, and lowers your stress.

Scientific research backs this up: The more you laugh, the better you’ll feel and the healthier you’ll be. Give it a try.

http://www.webmd.com/balance/tc/healing-through-humor-topic-overview?ecd=wnl_can_080613&ctr=wnl-can-080613_ld-stry_1&mb=

 

Coming Soon: Survival Guide to Chemo! Today: being grateful!

August 4, 2013

My Survival Guide to Chemo is almost done, but if you need it for friends, family, or whoever…just email me and I can send you what I have so far. These are my tips, tricks, and what I have learned from having 14 chemo treatments from 2010 to now! This includes hair loss, nausea, constipation, accessorizing for chemo land, camp chemo, and more! I am definitely not a doctor and even though I studied a lot of medical stuff and anatomy, each person is different. My hope is that the guide will create short cuts instead of doing what I did and learned my lesson after the fact!

 

What is all this happiness and gratitude business all about? by Lynn Johnson PhD

• Studies have shown that positive emotions are one of the most powerful emotions.
• Gratitude can really change your attitude and your outlook on life.
• Grateful people feel more alert, alive, and interested in others.
• One reason that gratitude works so well is that it connects us to others.

Studies have shown that the gratitude diary is one of the most powerful tools at raising levels of happiness.

Write 3-5 things that you are grateful for everyday.
Things that you did as well as things that happened to you.

Reframe an event. Look for something that is actually positive about a negative event.

from me: find your one fun thing today in the words of my great friend!!

http://onefunthing.com/

Make the most of your day!!! Enjoy every moment!