Archive for February, 2013

“Hope can be a powerful force. Maybe there’s no actual magic in it, but when you know what you hope for most and hold it like a light within you, you can make things happen, almost like magic.” — Laini Taylor

February 22, 2013

My face rash is not too bad now. I never had bad acne, so I am now thinking of all those kids back in high school who must have suffered so much and I was oblivious. My hands still have the rash and some things are more difficult to do. Unfortunately, my feet are still an issue and being unable to walk has really been frustrating. I have tried every remedy and nothing seems to be working. I called the drug company again and they said that my body may adjust in a months time. I can still hope. My visit to UCLA was shorter than normal, but my mind played tricks on me and I was nauseous even though I didn’t get any IV chemo. My doc is suggesting that I stay on this reduced dose and see another doc at Cedars for a back up trial plan. Unfortunately, my tumor marker went up a tiny bit, so we have to wait and see. This creates all sorts of uncertainty and frustration. If I can take one more pill, could this work better? The drug company has no info since this is an off label use. All I can do is to be positive and hope that it will work AND stop causing the foot pain. Even though we are trying so hard to maintain and upbeat attitude, the visual of me shuffling around the house and wincing in pain with every step has caused Alex to have his bad dreams. He has come to our bedroom in tears and just wants to be told that everything will be okay. I can only tell him the truth that I will do everything I can to be here for him. I am so thankful to have such a wonderful support system, but I know for all who surround me with love that it is frustrating to not be able to do anything. I think a cancer diagnosis is not about the doing, but about the loving. Knowing that I am surrounded by people who care, pray, and think about me (and my family), I feel comforted. Yes, I do secretly wish that someone had a magic answer for this foot pain, but I will figure it out as I go along as I usually do. I managed to walk through the Parthenon in the heat of summer with my feet issues, so I will figure something out for a trip to the grocery or a walk on the beach. I honestly cannot believe that it has been 3 years of this craziness. It is all a bit blurry. So, I will continue to take things day by day. I will be on a “countdown” since this drug is known to work in 4 weeks. Only 2 more to go and I am hopeful I will have answers. Next week, back to the blood test again since this drug has now impacted all my blood counts for fun. Nothing like the other chemo, but something I need to monitor. Looks like a weekend full of sunshine. I know I will find mine and hope you find yours.

And so it begins…side effects out of control

February 15, 2013

We went to USC and were surprised despite the location of the nice facility. Hey, they even had a pianist in the lobby like Nordstroms. Our meeting was the last in the series of meetings and left us feeling not only exhausted, but frustrated. The most positive thing was that this doc read ALL my coffee table book of tests, scans, reports, AND actually put it together like solving a “crime” scene. Only she did not have the full knowledge of what is coming and it wasn’t her job to know. She raved about my doctor about how intelligent he is and what a very kind man he is. This made me feel more comforted to know again how lucky I am. She did speak to us about what she currently has going with patients like me. She mentioned the weekly chemo and explained that weekly chemo is not my last resort, but a chemo infusion administered in the hospital would be the last resort. I became emotional when I explained my goal of seeing Alex graduate from middle school and my dream to see him graduate from high school. She explained that gynecological cancers really “suck” (my words not hers) and the problem or truth is that there is no voice for these cancers because most women don’t live long enough to be “the voice” and most husbands re-marry so that is that. Plus, the truth about drug companies needing to make money on ongoing treatment and the reality of that business is what it is.  She did explain about being hopeful and facing adversity with dignity. All in all, the meeting was somewhat productive, but again we had left with no real plan. So, our plan was for me to begin with the renal cancer drug.

As the days progressed with this new drug, I began to get every side effect listed and a few more. I called the drug company to confirm that my extra side effects were in the 1% of the patients get these. So, I was getting a bit annoyed and had a bit of a pity party for myself. After the party was over, I decided while I was sitting on the sofa hearing about Alex’s day that it was better to be here sitting and hearing than not at all. Pity Party over. I was so exhausted moving from location to location in my house. It was more than a field trip. Last night, I could barely walk due to pain in the feet and barely brush my teeth due to pains in my hands, plus the lovely rash on my face did not even improve my ghostly complexion…I decided to leave messages for my doctor asking to take a reduced dose. I was reminded by Jim that the goal was not to see who can take the most of the drug, but to take the drug on a continual basis to see if it can kill my cancer (without killing me first). My doc responded immediately to reduce the dose. Of course, the meds stay in your system for 48 hours, so I could feel better starting tomorrow. Then, next week back to UCLA for a general exam, plus a few tests to see if this drug is working. I am very hopeful and look forward to the long weekend. So, it continues….since I am in a drug state of mind now, little things are difficult for me to process and things weeks from now are not even in my grasp. I am still taking it day by day. Each day I have to evaluate what is possible to do that day. Unfortunately, this leaves a lot of piles around the house, but we are used to it now. While I face each day with determination to make the most of it, I am hoping that you don’t get caught up in the little stuff. Take it from me, there isn’t enough time for the negativity or for those emotional vampires that suck the life out of you. Each day is so precious and I hope you enjoy yours as much as I enjoy mine.

Clinical trials-I am a piece of meat!

February 8, 2013

My weekend was a giant fog mostly filled with sleep and nausea. I wasn’t sure if the cumulative effects caught up with me or I just blocked out what each time gave me. There were nights when Alex came to our room crying with his bad dreams and there were nights when Jim and I couldn’t sleep. I decided among the foggy days to pick up some of the cancer books on my shelf. Could one contain the secret message that I had been missing all these years? Could one hold a method or remedy for any of my ailments? I started my skimming since my focus was almost gone due to the toxicity of the chemo. One thought kept passing through my head: the power of the mind and positive thoughts. I had seen this time and time again at the chemo closet. I decided to type some mantras to say to myself every night to stop the bad dreams and to give Alex a new direction for his own fears. I also decided from a generous fun gift from NEGU (never ever give up) that I would tape NEGU signs around the house so that if I started doubting, the words NEGU would be in my face and the image of Jessie Rees’ smiling face would continue to inspire me.

On Monday, there was a visit to an integrative doc who had no answers and few suggestions. I have the best fake doc around, Jim who uses every extra minute to research, email, and read any latest studies from around the world. Then, Tuesday was the visit to the clinical trial doc at UCLA Santa Monica office. I have to say again that visiting these different oncology offices makes you appreciate where you are. It took us 30 minutes to find parking and the usual 30 minutes waiting. Never bother to show up early for an appointment since you always have to wait. The place had a bad vibe and I tried to ignore it. Once we were taken back to the exam room with paper thin walls, I realized how much I disliked the place. There is something to be said for feng shui and this place had none. Not to sound strange, but the energy was not good. Yes, I realize it is an oncology office, but something was off. Jim and I manipulated the window blinds while I laughed at the fact that I thought someone from the building across would be peeping into my exam room. We listened to the conversations next door: surgery or chemo, stage 1 and doc says patient should be happy. Cancer is cancer…not sure what the doc wanted from the patient, “yippee I have stage 1!”  Jim and I laughed and I especially laughed since they made me sign a 20 page document for privacy…think they should consider adding listening to conversations from adjoining paper thin walls. I had worn lip gloss and some make up to hide the “suitcases” under my eyes. When I got dressed that morning, I was thinking that I need to look good if I want to be on a trial. I kept thinking of the “pick me” scenario from elementary school playground teams. Little did I know, I looked too good as usual. This doc looked at me like a piece of meat and pushed his agenda without hearing a word I said. Somehow the fact that we had driven for 2 hours didn’t connect with him as he said eagerly that I would have to come there for eight weeks in a row. Oh, by the way he just slid over the fine details of side effects of tremors and diarrhea. Not sure if it happened at the same time! He did add with enthusiasm that the tremors were not permanent, so was the diarrhea? In his words, seats were going fast, so he could save me a seat, today, one day only was this great offer. Oh, he also mentioned an 8 hour urine collection and even more fun some 12 hour days there. I was thinking the entire time that clinical trial docs would get a lot farther if they were trained on the motivation of a patient or even pretended to care about the patient. Maybe, I would consider it for the name of science? He had to do the obligatory exam with the obligatory 10 part questions to make a patient comfortable while the doc examines you. Too bad he didn’t bother to ask me about my group UCLA intern/resident/fellow audience exams with my “missing uterus”. I did not really need the 10 part questionnaire completed. He did not seem to care about my answers anyway. We left or ran out feeling that I was definitely not at this point of my treatment plan. Guinea pig time was not here especially while I have $50,000 worth of medication sitting on my counter for me to try.

To recap the next days…Weds was spent with hours on the phone with the insurance to help them reconcile my account because as I told them that a 5th grader could do this and not sure why it would take them 30 days. Thursday was my day at the Hoag Cancer center where I was convinced that they were giving away televisions or free trips to Maui as it was standing room only. After making new friends, I realized that there are way too many people with cancer all having the same problems. I decided to pass the time by solving other patient’s food crisis taste bud issues. We traded stages of cancer like a game of whoever has the highest will win the trip to Maui either by votes of sympathy or who had the most surgeries or chemo. I knew I was a winner for sure.  Most of these stage IV’ers said it with the “poor me” attitude, but I said it with conviction and enthusiasm. After hours and hours, I did get my news of my tumor marker being higher than we expected. The nurse just nodded his head and smiled saying that he thought I knew to expect this number. It is the nature of the disease. Yes, I know. This is the second time since my diagnosis that I feel afraid. The first time was hearing the word, “cancer” and my name right next to it. I push the fear aside while Alex calculates a projection of my tumor marker based on his fancy algebra formulas. I am happy to provide a complex math problem. Tomorrow is a new day and I will go to USC to see if there are any new ideas or the same 10 part questions once again.