Archive for March, 2013

Cancer SUCKS!

March 29, 2013
I am numb and in shock. Why can’t this cancer cooperate? Seriously, it is causing so much stress and pain on my family that is unbearable and so unfair. My scan shows cancer in my abdomen, pelvis and diaphragm. The trial drug didn’t work and so now my option is weekly chemo. We are supposed to go on vacation to Honolulu next week, but unless the drug starts working fast…this vacation is out of the question. I hate that cancer has tried to stop our fun and won’t go away. There is no easy solution and no easy day to day living in this phase. Each day brings more frustration, nerves, and pain both physical and emotional. When I saw my doctor on Weds, he grabbed both of my hands and held them in his. I don’t even remember his words as I continue to feel like I am in a tunnel only hearing every third word. While the trial drug ate all my good blood cells, I had to have a transfusion at hoag irvine. One of the nurses asked me how I can stay so positive. I told him that I have no choice because if I give into the reality or any negativity, I am afraid of losing my hope. One therapist and nurse said it is good to visit the island of negativity, but jut don’t stay there. I say that when you are in the fight for your life, that island has no place for you because you may end up staying there indefinitely. Numbers and statistics have no place in this plan. I can only go by how I am feeling and that is frightening enough. What I can focus on is that’s have been here before and did bounce back. I know chemo is what can kill the cancer and I am stronger than I was at other times. I can only go by hour by hour or even minute by minute. I ask of you to give my family strength, hope, positivity, prayers and anything else you may think will help us during this road less traveled.

Up Up and Away is my tumor marker…Yikes!

March 20, 2013
So, my tumor marker doubled last week. I had a slight panic attack since I really don’t feel that horrible. I talked to my doctor who was in a meeting, but stepped out to talk to me. He explained that I really needed to see if this trial drug works for 3 weeks and have a scan to see what is the reality with the cancer. He also explained to me that if I add weekly chemo now, my bone marrow and other body systems would be continually beaten up which may shorten survival time. In other words, get worse before I can get better. I see his point as every doctor who sees my list of chemo practically faints and is in disbelief.This makes things difficult as I would rather not have the cancer grow, but we don’t really know the whole picture until I have a scan. I looked at my past scans to be prepared what may appear and to know how far this cancer has grown or not grown. Basically, I pretend I am the radiologist.

My days have been filled with the cancer job to plan, to talk, to guess, to pray, to hope, to dream, to cry and to attempt to stay in the now. The days pass and the week goes by. This week my tumor marker is still on the rise, but I try to focus on the fact that it stopped doubling or tripling, so it may mean that this new trial is working. All drugs are not without side effects, so now after two weeks I feel the effects. Anything that allows me to walk, allows me to put the other side effects to the back of my mind. We are at a strange place with taking a lot of chances because there is no known routine or treatment. I have to believe at my doctors will not let me go to far, but I also know that there are others who scream louder and higher. It is a strange tightrope that I walk and not very comfortable. I am realizing in the cancer job that I need to get my 15 minute break from cancer. I just haven’t quite gotten into that routine, so I will make every effort to get my break. Isn’t it a law?  Until then, we will be going to UCLA tomorrow to do tests for the trial. As much as I graph the numbers and review my coffee table book of labs and scans, there are no real answers that I can find.  I can try to focus on the daily stories of middle school, but last week proved to be a mixture of pain and sadness for Alex. It was one of those bad timings and good timings all at the same time. Typical middle school behavior with the “you’re ugly, you’re whatever, to the your mom is going to die”…not sure how it all happened, but unfortunate remarks made by a classmate was a trigger for Alex. Luckily, his friend jumped to his side to reassure him of the silliness of the statement made. Alex handled the situation great with meeting with his teacher on his own and talking to the office. Again, it is times like this that I wish he wouldn’t have to think about any of this except for the joke about “you’re ugly”. We all moved on especially Alex when a classmate was whispering in his ear in band. Alex said that he looked straight ahead and ignored this boy, but his band teacher said to the classmate, “stop nibbling on Alex’s ear and whispering sweet nothings”…his band teacher is always entertaining! Alex was equally confused with the meaning of sweet nothings.
I really wish I had answers or just a slight hint of a plan. I do know that we will be going to Honolulu for spring break, so I can dream of Hawaii again. Until then, must stay with the one day at a time.

“Unlimited, Together we’re unlimited, Together we’ll be the greatest team there’s ever been”…from the play Wicked

March 12, 2013
My rock star hubby has been the best cheerleader this week. He has never stopped researching, never stopped asking questions, and never given up hope! We started at UCLA on last Monday to begin or should I say expedite the trial process. I did all the tests.  Even though the paper pusher felt that it was “impossible” to get the trial finalized by Thursday, my doc insisted it would be done. Next thing came her change of attitude as I explained in detail the aggressive nature of my cancer. Unfortunately, like many other ovarian cancer patients and cancer patients in general, when you are out of options…the “options” that appear are not always what they appear to be. Bottom line, there are many “real” doctors and clinics taking advantage of the desperation of patients in my situation. There is no quick fix to cancer or there would be a lot less people dying every day from cancer. There are many integrative approaches to many illnesses including cancer. I am a firm believer in treating the whole body, the whole person. Chemo kills cancer and a lot of good cells too. In other countries, this approach is seen as a normal part of care. In major university hospitals, this is becoming more part of normal care. So, for me I am all about trying things especially things which I know to be either helping or not hurting anything (one can never know what is doing what). My doc is very supportive of all of this too. Now, comes the tricky part…going to a doc in the area who really knows what they are doing and knows about cancer. This is a rare combination. I became a victim to a doc who didn’t know what she was doing. I had asked the numerous questions only to realize later that I had been given the wrong thing. I know my history, know my blood work, know my numbers and it was unfortunate that this doc didn’t read or understand the big picture. So, no real harm done except for what I was supposed to be given was replaced by a combination of vitamin B which if you know this combination…it is a great energy boost, but not when your vit b levels are exceedingly high like mine. I was basically “on crack” vitamin b and could have jogged around the neighborhood at 2am. Lesson learned again…even though I asked the questions, there are some places that really don’t know what they are doing. Now, this place has a “fancy” office which was very deceiving. Basically, you cannot judge an office by its appearance. It was unfortunate that I saw so many desperate faces there who wanted a “cure” or a magic potion or just really wanted to feel better. I know how that feels and it really sucks when you have cancer and your days are filled with potions and lotions only covering up the surface, but not killing the cancer inside. After my “crack” episode, I decided to go to another place later in the week which wasn’t so fancy, but truly cares about the patient. Even at this second place as the nurse pointed out to me, I must be my own advocate and make myself loud and clear on what I will try to help me on my roller coaster ride with my cancer.
Too many lessons learned this past week. I had the usual realization that there are few ovarian cancer activists because so few survive and the ones battling the disease are truly in a constant battle with little free time to get some attention to this darn disease. I know because if I had some spare time, I would yell to get some attention to this horrible disease. I learned at my visit to Cedar Sinai that drug companies don’t want to invest in a drug that won’t make them money long term. They cannot afford the amount of money that is required to even get a drug approved. Ovarian cancer patients are not at the top of the list despite the statistics that 1 in 72 women get ovarian cancer and it is the number one cause of gynecological cancer deaths. Ovarian cancer patients get the left overs. Before approval, drugs for cancer get “tried out” by patients of many cancers…so drug companies can know if they can make more money. Don’t get me wrong, I am all for pharmaceutical companies. It just doesn’t help that I don’t have a “popular” cancer. All my history adds up to a rare situation which I have been told many times at my other 2nd, 3rd, 4th, 5th opinion appointments. In my mind, all the more reason why I keep fighting this fight and don’t look like the typical cancer patient. Yes, I have had the world’s record of number of chemo treatments.  If you look at the functionality of my body, my body is still fighting. This Cedar’s doc was so surprised reading my giant history of chemos as most doctors are and said to me that my “bad” day is a great day for any other cancer patient. I do realize this, but he doesn’t know me and that I hide “things” well or just don’t focus on the many ailments I have. It takes a lot (like inability to walk) to stop me from exiting the house.  My lovely trifecta is so special that it just won’t disappear. Cedars did not have anything for me either because I have had too much chemo or don’t have a giant tumor or don’t want to move to LA. So, we went back to UCLA to pick up the pills for this trial which may or may not help. During this long week and the search to find something new to try, my rock star hubby never gave up cheering me on. Every morning he welcomed me with the, “you’re cured! you look cured!” It gave us something to laugh about this week. In the back of our minds, we know we only have a small window of time to try something before the cancer grows too fast. We do have the weekly chemo in the back pocket, but are trying to focus on these trial pills from UCLA. Alex had a few nights of bad nightmares and we came up with the reading strategy for him to get his mind off of things when he cannot stop his thoughts. Nothing cures a nightmare than reading about Ancient Greece or can put you back to sleep in a flash. Back to my rock star hubby…appointment after appointment, he continues to amaze me with his knowledge and his ability to articulate the cancer doctor language and his love for me. He also keeps me smiling and laughing especially when I am on my pity pot. So, we will go back to UCLA next week, but until then…day by day.

Dear Cancer,

March 3, 2013

Dear Cancer,

You have really tried to make me crazy these past 3 weeks. Despite my recent hair loss, painful and itchy scalp, inability to walk or close my hands, I refuse to let you win. You keep trying to push the limits of my tolerance of pain and my hope, but I won’t let you win. My hands and feet are now peeling and you keep growing despite the strength of the drug and it’s side effects. You have forever changed my life, my family’s life, and the life of  anyone who knows me. You have caused too many tears especially for my son. You have kept my son awake at night and my husband too. You keep trying to beat me and destroy every ounce of strength I have left, but I cannot let you win. So, this week when you decided to grow again and not respond to this drug, I decided to be a guinea pig. My doctor thinks it is worth a try, so I will try. I changed my mind about this guinea pig experiment. This is what happens when you decide to limit my options by just growing and not shrinking. I can change my mind and I will.  I cannot let you win. Tomorrow, I will begin this guinea pig process at UCLA and I will see if there is anything better at Cedar’s.  You thought you broke me when I couldn’t walk, but I walked anyway despite the pain. You don’t know me and my strength. You don’t know what a great support team I have. So, you thought you were winning when you had me home bound, but you forgot that I have been doing this for 3 years.  You thought you were winning when the doctor I saw said that I have permission to break down with your bad news of your growth. I didn’t break down because I don’t have time for that. All my time and effort will be used to fight you. You thought you were winning when you made Alex in his dreams see me collapse at our favorite beach and leave him alone crying buckets of tears. You forgot that we may visit this nightmare island, but we don’t stay in it. We live for today and make the most of our days. I will do what I have to do, Cancer-never forget it because I won’t.