Archive for October, 2011

The Waiting Game

October 25, 2011

I definitely am more of the plan ahead type instead of the wait and see type. Besides catching “the crud”, I now fully understand the damage that chemo did on my body. There is something odd when you put nose drops in your nose and they come out your eyes. It has some benefits for Halloween, but I have to say that the burning sensation is something I can do without. I have said this before, but have to say it again…what is up with the single upper lip hair growing at a rate of usability as your dental floss and the top of the hair growing very very slowly. Plus, all the “blank spots” as Alex calls them leave a lot to be desired.  My old body (BC-before cancer) would respond to antibiotics so quickly that I was better in a day. Jim and I were discussing the fact that I never really got sick. I like to go for the big diseases like cancer. Now, a simple cold can turn to pneumonia in a snap. I am happy that my cells made enough vaccines at the vaccine factory, but I think between that process and the chemo, my immune system is broken or in very slow repair.

I have been talking to a friend who was recently diagnosed and she said, “we will never be the same”. She is right. We talked about our kids and how we both are planners. When questions come up now about “what did you do when you are a teenager?”, I think more about what I should be writing down like what to NOT do when you are dating. Not to sound negative like the episode of the Big C with the main character buying gifts for her son at every age (even a car for his 21st birthday) and hiding them in a storage place, but I want to make the most of this waiting time. Things cross my mind during this waiting game. I used to write down all the funny things Alex said or did in this journal. Of course, I noticed my last entry was over a year ago. I did go back and read some of these Alex sayings and was laughing out loud. During my waiting game, I want to do more of these types of tasks. I want less to focus on my cancer job. Unfortunately, the 2nd opinion program for Jim’s work is turning out to be more of a cancer job. I told this company that lucky for them I am not the “last resort, crisis cancer patient” because if that person was waiting for a second opinion…UH OH!

I am definitely back to making the most of my day doing things I want to do and being around people I want to be with…avoiding those vampires of negativity. We managed to go to Oak Glen last weekend even though we usually go in November. I told Jim that we better go when we all can go. Tomorrow is just not acceptable. Back to Vickie Girard, “Remember we had aches and pains before cancer, just as we do now. Every one of your aches and pains is not cancer. There comes a time when every cancer survivor must simply step out the door and do it-and for us, the “it” is to live.” This is what I will continue to do! Live and Love! Make every second count even if means waiting….

 

Confessions of a chemo addict…

October 12, 2011

It may sound strange, but I think I am a chemo addict. When you don’t have toxic poison running through your veins, you feel that something is not quite right. You forget what “normal” felt like. Honestly, it makes my new mantra of focusing on the “now” even more difficult. Instead, every pain or ache becomes more of answering a question with a question. I think back to my procedure last week and they told me that the effects would be minimal, but I am still so tired and feeling “drained”. I guess I was “drained”. I think I need my cells back! Strange how the universe works, I always think I am sending some telepathic messages out and I will get an email or a call to reassure me. Yesterday, one of my UCLA doctors phoned about his schedule. Did he get my questions telepathically or did he just miss hearing my voice (right!?)? Normally, the office calls on this type of thing or I would get an email. Either way, he did have me refocus my thoughts to the vaccine that is getting manufactured for me. He referred to it as “weeks away”.  I think the “not right feeling” also has to do with the 2nd opinion benefit through Jim’s work. I had to gather all my scans, reports, and infusion info AGAIN. Glad I am doing all the work even though I had to tell them to ask for a supervisor to get the real slides. Why do I feel a need to read my surgery report or pathology report again? I know I have better reading materials! It is as if I am looking for some clue or some sign that someone had missed.  As much as I don’t miss the toxicity of the chemo, I don’t like doing nothing. I do remind myself that I am doing something. When I re-read my infusion chart, I also remind myself how much I don’t want to do chemo again. With all my reminding, I do tell myself, my family, my friends that I will do whatever I have to do-no matter what it is!

Back to the “now”, Alex came home from school with low grade fever for something fun, but somehow feels fine to be on his computer. We will all be in bed early and be sleeping in tomorrow! (okay, maybe until 7am?!)

Lessons learned….

October 10, 2011

My “ride” to Scripps was a learning experience all around. As Jim, my mom, and I waiting for the sunrise over the Torrey Pines Golf Course and see the ocean view emerge, we began the adventure for the day. We were brought to the family room, but did not notice anything really family oriented except if you counted the view?! My one nurse was amazing who took my blood from my hand. As he attempted to take my blood while kneeling on the floor (as he said without a proposal), he was so quick that I barely felt anything. There was a very serious tone in the air because as funny as I attempted to make this process, there was nothing funny about it. The ICU nurse saved the day using an ultrasound machine to find a vein deep in my arm without having to draw a central line. She had the magic touch! I was horizontal for 6 hours with barely a view of anything except the CLOCK. The patient next to me was doing a stem cell procedure and besides watching some movie without headphones like Terminator 4, he was moaning and groaning. I had headphones on to get in the zone with the addition of some xanax which took the edge off.  An hour at a time passed, but then came the critical moment of having to go to the bathroom. Let’s just say, it is a full workout trying to urinate while you are flat. Also, let’s just say, they should tell you to bring change of clothing or are most people so drugged out that they do not realize what is happening? While I was “resting” (trying to avoid looking at the wires in/out of my body), I thought about my grandma who was wheelchair bound and had to rely on people to scratch her nose, wipe her mouth, feed her, etc….I always  knew she was amazing, but I had a new found appreciation for all she dealt with! She never complained and was so strong and determined. She always thought of others first and never lost her temper unlike my last hour of horizontal temporary immobility. Oh, I was  calling for my mom when Jim attempted to fix the headphones and fix my hair. I claimed Jim knocked my wig crooked, but I was just about to lose it not being able to move for so long. I also thought about this guy next to me doing such a wonderful thing for someone else.  There are some selfless people out there. All in all, I was told that I did great. I did have the fear put into me by my nurse who told me it would be hours longer if I moved even an inch. Now, I wait for 5 weeks to get my vaccine and hoping that these cells produced 10 vaccines, so I don’t have to repeat this procedure again. At least, I know exactly what to do next time if there is a next time. In the meantime, a new appreciation for many things, especially the many things I take for granted.

Brady Bunch designed Scripps

October 5, 2011

While enjoying my lovely drive in the rain to La Jolla, I could not even see the ocean! Once I arrived, I noticed that the hospital not only has an ocean view, but is right on the Torrey Pines golf course. Unfortunately, the circa 1970s building has not been updated at all. The lobby is definitely groovy with a strange atrium and fountain in the center. I felt like I was in a scene from the Brady Bunch with a possibility of  any moment, Austin Powers dressed in doctor scrubs welcoming me. Come to think of it, my new nurse would really look like Austin Powers if only he had that accent to match his look. I attempted to find my new nurse who was on a scavenger hunt for my chart. This hunt continued with finding the location we were supposed to meet my nurses for Thursday. I had to remind him, not once, not twice, but three times that I was coming back on Thursday. This became a very confusing Brady moment for all, somewhere between the episode of Peter’s voice changing and the repeating footage of Marsha’s “oh my nose” only my nurse kept repeating, “oh, right, on Thursday”.  We finally made a gigantic circle. I realized on my own that if we walked straight from the entrance of the hospital to the first nurses station, we would have found the right place in seconds. Boy, this was a fun time for sure. I met several nurses who will be there for my procedure on Thursday. I learned that they were focused on me fully drugged up and suggested 2 of the drugs which caused me to hallucinate and go crazy. No thank you. The one nurse looked at me as if I was saying no to a check for a million dollars. Not sure what was up with this, unless there was a need to put me to sleep and hallucinate for a couple of days. Maybe, I was missing some details. Of course, this did make me think of how to use the bathroom and my new nurse had no idea or just didn’t want to give me the news. Oh, I will be using a bed pan. Can you say no food or drink? No thanks, but I reminded myself it is only for one day and for a good cause. Of course, my next concern is that my cells get to the place to make the drug for me or will they be lost in space?!

I did finally meet the research doctor after meeting with his gatekeeper who translated what I said. No, the research doctor does not speak another language. He just doesn’t have the time to listen. A whole new world for me. No audience? I was asked by the research doctor about a dozen times (I guess because I must have not agreed out loud, but just smiled) if I understood this was an experiment with no guarantees. I am sure there is some magic lingo that a patient in a trial is supposed to say, but I wasn’t trained in this area. He kept repeating and I said I understood, but somehow this wasn’t the word he wanted. I didn’t want to play charades and I am sure his gatekeeper did not have the time for that. He was waiting for me to say, “no more questions”. At least, I think it was this phrase. It was over in a flash with several private meetings of a group of unknown people. Were these secret researchers or assistant researchers or just more fans of the Brady Bunch building crew? I was shown a secret indoor walkway which links the two hospital buildings. I did ask why would you need this indoor walkway when you have the best view of the ocean and golf course. It is all so puzzling. I am not sure my room does have a view of anything for my Thursday procedure. I think I was too overwhelmed by the big centrifuge machines and the fact that they wanted to drug me with drugs that I don’t want to take. Just in case, if you get any strange text messages or emails from me on Thursday, I want to apologize in advance. This is all in the name of scientific research!

Trials and tribulations

October 4, 2011

I always say that I wonder about the rest of the cancer patients. Either those who are not organized or those who have not made cancer a job (not by choice). In case anyone was wondering, I now work at Scripps. It was confirmed today by a call from a doctor in error.  Oh, just call Joanie and she will point you in the right direction. I guess I should have gotten a clue when they ordered the wrong scan. Now, this is the case of the “you are not a priority” because we gotcha! You are trapped! We got the goods and you want them. So, you may be in the fight for your life, but we are busy and have bigger priorities like looking at some petri dishes of cells. Is this the life of a cancer patient in a trial? My appointments were rescheduled 3 times and I have now told them that I will shake a hand tomorrow and then, I am off. I used to think of UCLA as a factory and joked that unless you are bleeding out your eyes or taking your last breath, you are not the priority. I have learned my lesson now. At UCLA, they do understand the life of a cancer patient. You just don’t cancel without another appointment lined up and you try to understand from the patient’s perspective. Come on…do I want to drive to La Jolla at 5pm? Child care, who cares, you are in a trial, so come and get it. Luckily, I sent my email to confirm my appointment for tomorrow with location, suite, time. I am glad that I work there now since my benefits are that I get the drug from the trial. There are no assumptions. I cannot let my guard down and must triple check everything. Sorry, but I don’t have any faith in the organizational skills of the paper pushers who are holding a key to my future treatment. This is why I will continue my trek to UCLA while I am in the trial. Should I be concerned that my last phone call from Scripps included a list of contact names with numbers of the boss of the boss of the boss?  I guess I am covered.

All in all, this is a strange place to be without my toxic chemo. I can almost taste my food even though some foods still taste strange. It is incredible that my hair is still not staying “in”. It is not a rainfall of hair as it really wants to stay, but a slight shower. Geez, toxic or what? I cannot explain how much better I feel without the “drugged” feeling. It is the feeling like you never get enough sleep or had much too much to drink on a daily basis. Guess it could be a chemo hangover. I still need naps and still am missing my boundless energy source. I get my short bursts of energy when I can go to Costco or the grocery. I even have walked Alex to school. Of course, too bad so sad that he is now embarrassed if I say goodbye. I just enjoy taking deep breaths of the almost ocean air by our house. (okay, more canyon air than ocean) I even had a mini date with Jim and we ate watching the sunset. We even went for a walk and saw the moon reflecting on the ocean which looked so incredible that it seemed like a backdrop for a movie. I am still about taking advantage of every moment when I feel good because I still have my days as most everyone does. I just appreciate the good moments even more! Wishing for good dreams and no traffic for tomorrow!