Archive for November, 2011

Fastpass to Scripps Next Time!

November 20, 2011

Wow, my visit to Scripps was certainly either a skit from Saturday Night Live or just the comedy of errors. Jim and I had to laugh at times because it was either that or the alternative. We were told to be there early to run some tests including blood. So, after 10 minutes past the early arrival time, the entertainment started. Even though I had responded to numerous emails and these people had seen me in person, they still believed I had a port. I told them I didn’t have a port which caused some major confusion and no one knowing what to do next. Then, after 20 more minutes of “research” because I don’t have a port, I asked again, but now there wasn’t a chair available. After thinking the mystery was resolved, I was told to go back to the infusion room. Unfortunately, this was my first visit, so I had to ask several people how to find this room. I started walking down the brightly lit hallway to see a dark room, blinds closed, and door closed. Of course, this had to be it. This is where you would obviously treat cancer patients. This is a closet unlike any other I had seen. Plus, for some unknown reason (since these people were still ALIVE), the temperature was below freezing. It was a strange set up and was designed by someone who thought the nurses should have the best view because they are sitting so much and not tending to patients? The nurse’s station was facing the windows and the lazy boy chairs were sitting side by side facing the wall. All these patients did not look that good, but who would with such a great environment. Plus, I noticed the bags of drugs just hanging on a pole with no meter to measure the amounts or slow the drip if necessary. No wonder these women looked sick. There were 2 nurses in this closet. One had to ask me about my invisible port, so I asked her if I get one as a souvenir today. The other was looking for my orders. The first nurse asked me my name and asked me where my orders were? Who is on first and who is “in charge”? This back and forth went on for a good twenty minutes. After the order was found by the clinical research nurse, the game began with the find a vein and oops, let’s not use that big needle. After this, the game went to how many tubes do we need? I decided to do some upside down reading and read the orders. Once I confirmed these orders with the research nurse, I asked for the labels to label my tubes. Oh no, they don’t have labels. Okay, I joked first when I was attempting to find this closet if I had to BYOC (bring my own chair) and now this is  BYOL (bring your own labels).  This was definitely a game of treasure hunt. Who could find anything in this dark room? I wanted to yell, “turn on the sunshine and lights for these cancer patients AND turn their chairs around”. My research nurse brought the sharpie and tubes were labelled. Do you think I left my precious blood without watching it leave the room? I sat with  my tubes like they needed me to hold them in my hands or risk rolling off the counter and starting this process again.

Phase 2 came with the addition of the waiting game of, “oops there is no examining room” followed by, “oops, what is this lymph node”.  The clock kept ticking by and there was no oxygen in the room. Luckily, Jim was still thinking and opened the door. We did the back and forth of waiting for the doctor, the doctor left, no the doctor is late, no the doctor is here. We informed everyone who would talk to us that we have never had such an experience and if the doctor is late, you call the person! When we got into the room, the examine had to happen before this magical vaccine could happen. In my exam, it was discovered a swollen lymph node (or so we thought). The more it was pressed, the more it hurt. Nothing phases me anymore. After THE doctor arrives, the question of the lymph node disappeared. This is a ligament that you can only feel in thin women. Good to know that they have a lot of experience in heavier women? I also learned this tidbit in case I couldn’t feel this area, to know that I am gaining weight?!

Finally, the moment had arrived with my vaccine. The vaccine is in a giant box with dry ice. I joked (kind of) that this vaccine was for Bob who has prostate cancer. I wanted to know that this was my vaccine and these were my cells. We asked many questions to confirm every step of the way since this was proving to be a bit frightening.  I was also informed that the vaccine gets bumped off the flight if there are animals flying in the cargo area. As Jim said, did they find this out after an animal was harmed in this vaccine trial?  There was so much paperwork just to take these teeny tiny vial from the giant box. After the checklist was done, the moment came. I had to mention about my previous surgery removing my lymph nodes (since no one read my chart) once they explained that the multiple injections are to reach the lymphatic system. We had a discussion about the sites which was quickly resolved as I was losing my patience. We did get a catered doctor lunch that a pharmaceutical company brought. We definitely deserved a medal or something after the continuing sagas on this trial  journey! We did have the time to ask one question: is this working for the patients in the trial? The answer after a careful game playing since they cannot really tell us the answer is that all the women in the trial are still in the trial meaning that their cancer did not come back because they would have to leave the trial.

The injections were not so fun, but I am happy to report that with only some minor side effects-all is good!! This is nothing compared to chemo! We are now fully prepared for the next time in one month. I did ask the doctor if I can get a fastpass next time and avoid the mishaps and calamities of errors. She said that I could, but I never got it in writing! Just chalk this up to another experience in the journey of cancer treatment!

13 is my lucky number!

November 16, 2011

The results are in…drum roll and my tumor marker number is normal!! Just in time to start my vaccine tomorrow.  Yipee! That chemo was so magical that it just kept on working until NOW! I am so glad that I stopped chemo and even happier that it kept working even after I finished. So, after reading the 2 page side effect warnings of the vaccine, I am convinced that I will have itchy teeth and hot toes? It has to be better than chemo. With the recent news, it seems that these vaccines are the latest and greatest idea to try for cancer treatment.

My expert 2nd opinion has proven to be somewhat helpful with many other ideas on new trials and new chemo coming in the next year around June. Gotta know what the latest and greatest cancer treatments coming soon!  Of course, this 2nd opinion benefit has had some drama with the company defending their “experts”. I still hold firm that an expert is defined by this company one way and another way is the reality. My latest “discussion” included a debate with the director of this company who argued that despite the first opinion from a gastroenterologist, he really had gynecological oncology background. The other opinion from a guy who looked about 12 was very knowledgeable, but I question how much experience or expert experience he has with patients. As I said to Jim, “how many lives has he saved?”. He is great at writing papers, but what about the treating of patients in real time?! I could not win the debate, but made my own expert cancer patient opinions loud and clear. For me, this type of customer service with anyone is unacceptable and with a cancer patient even more unacceptable. I am not waving my white flag yet as I want to prove that there is always room for improvement and an apology or even a “we’ll look into it” would have been better than the “you’re wrong and we’re right attitude”.

In all my free time, we have been making the most of every minute which included a visit to Disneyland with the cancer pass (gets you to pass the lines even though it was empty at the park), Wild Animal Park, Getty Museum, and Blue Man group. This was all in one weekend! I am still having that passing out at the end of the day, but after over 18 months of chemo, my doctor said that this is normal. My taste buds are finally back and now just in time to eat the leftover Halloween candy. I am so thankful for everyone in my life. I cannot express to each and every one of you how your laughter gives me energy, your smiles keep me going, your words inspire me daily, and just being you makes me happy and thankful!

“Share your success with your children. Let them grow up knowing that cancer is not always the end of the road, it is usually just a bend in the road.” Vickie Girard

November 6, 2011

I have the cancer book library thanks mostly to my cousin, Margie. I have even created my own chemo for dummies version. There are several books that I go back to time and again. One is for laughs, Crazy Sexy Cancer and There’s No Place like Hope is a mini guide to cancer in all phases. I have been busy trying to live instead of fighting to live. Chemo does such a number on your body that I am happy that I stopped or have this opportunity for the vaccine.

For our entertainment, we received our 2nd opinions via FEDEX after much complaint to the company who is “organizing” my documents for me. They claimed to have never reached UCLA, but when asking and asking, they only left voice messages. I am glad to know that they feel my cancer is that important. Jim expressed his concern about this program with his company. This all sounded great in theory, but gives false hope to those people who are really needing answers today and not in a month. Jim and I were joking about the results even though it was really nothing to laugh about. My expert happened to be a gastroenterologist oncologist. The last time I took anatomy, I don’t think ovaries or uterus were connected to the stomach or colon. Things must have changed with modern technology?! I wasn’t even expecting much, but it was great to know that an expert in pancreatic cancer and colon cancer was giving me such a generic 2nd opinion that I could honestly do better online. Our point to Jim’s company was simple. If I was a parent of a child with cancer, this would be unacceptable. The second 2nd opinion came from a Harvard Med School Fellow, but I kept hearing in my head that character on Saturday Night Live, “I’m Brian Fellows”. He had made some good suggestions even though we had known about most of what he said. He made suggestions about trials that are happening out of the country. The best part of this 2nd opinion process is that it made a lovely presentation of all Jim’s hard work in a bounded collector’s edition of my cancer history. It is just beautiful. If I add the photos of the treats for the chemo closet, it would make a nice coffee table book. I am sure glad that I have my plans in place because this process of a 2nd opinion just caused more entertainment with a bit of frustration mixed in. The reality of the situation was like someone tossing a cold glass of water in my face. How can this system work for people who are really sick? Oh yeah, this may apply to me, but I am usually living in my twisted reality.

Of course, my true reality was back with my upcoming appointment on Monday at UCLA for some checking the body tests. I still feel a bit off and convinced myself that once I get my cells back with my vaccine that I will feel better? Then, the email from Scripps came with the delightful time of November the 16th at the end of the business day for my vaccine. Are you kidding me? Great, a drive that could take 2 hours will take 5 hours one way during rush hour. This email also explained that the doctor (who is doing the trial as a hobby) will only see patients like me on Mon and Weds and Monday will not work since the delivery of the vaccine cannot happen on the weekend. Okay, so this leaves me one day and did I mention that the doctor will only see patients starting at 11am. Yes, this doctor may be saving lives in surgery early that day, but cancer is selfish and I only care about ME! I sent my email explaining about child care as if I have 10 kids to arrange after school activities and the driving time as if I live in Los Angeles. Hey, I have to do what I have to do. Thank goodness my quick response gave me an upgraded earlier appointment. Glad to know the power of desperation and exaggeration will work. I know being treated for cancer is like having a cold to these people.  Good to know, I back in the saddle again. Let the games begin!

My bend in the road is something that I would hope no parent has to explain to their child. I would rather have Alex have his hero be Steve Jobs or Captain America instead of me “running an impossible race.” (this quote from his essay that he is writing about me as his hero) I would rather have Alex not fully understand how difficult it is to live with cancer only to make a comparison with children who have cancer. Of course, it was me who explained one day in bed, how does he think a child with cancer would feel? I know my cancer has changed him and I am making every effort that the change is going to have a positive impact  one way or another. I wish he didn’t know what chemotherapy is or a PET scan is….I am happy to have had this “down time” without the chemo, so we could really enjoy our days.

One day at a time…I will do the tests at UCLA and see what happens. I will get my first vaccine and see what happens. Until then, I will enjoy my day.