Archive for April, 2014

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


Cruising with Cancer

April 18, 2014

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A random list of thoughts about cruising with cancer:

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

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

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

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

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