Archive for January, 2013

Enemy of a cancer patient: the NIGHTTIME!

January 28, 2013

While my days appear that I look good for a person with cancer and am focused on the moment, my nights are filled with fear. Without a plan, I am forced to think of the pattern of the progression of the disease. I don’t want to feel like I did in August. I don’t want to lose ground or days that I have gained while this chemo WAS working. While I work through the calendar in my head, I realize that the meeting with the clinical trial doctor will be a process like it always is: do I qualify, more tests as are required by a trial, timing of the trial….blah blah blah which means it could be a month more time passing. This means a month more time for my cancer to grow without a drug to kill it. In the nighttime, I have mini panic attacks and wake up Jim who is in a deep sleep. He tries to comfort me, but we both know that there are no answers. I go to the guest room to watch tv only to hope that I can fall asleep to the glow of the tv and the monotony of the tv chatter. My thoughts begin to race to chemo buddies who were once like me and now on feeding tubes or unable to breathe. I wipe these thoughts out with thoughts of Maui or Alex or anything else. Nighttime is a nightmare where those thoughts which I pushed away in the day force their ugly face and scream at me in the darkness. Yes, I know there are pills to take, but those cloud my thoughts in the day and I want to be present in the day. I send emails to my doctor and realize the time stamp may be a “flag”, but I don’t care. I must push myself to the front of the line. Yes, there are those who are worse than me, but I hear a nurse echoing my thoughts. I am ahead of the disease and once I lose ground, then the cancer tries to win. I just cannot let that happen. It is all one game and you must keep playing it. I know I have been to this fork before, but now I know how bad I can feel and how quickly the cancer can spread. I hate the night. It plays with my mind. The night makes me feel alone as it pushes all those bad thoughts and clouds my optimism. Eventually, the fatigue sets in and the glow of the tv disappears along with the negative thoughts. The tears that fall without me realizing, stop as I give into the sleep. I will begin tomorrow with a few more emails and hugs for my boys. I will try not to think about the enemy of night and as usual focus on the moment of now.

 

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” Mother Theresa

January 25, 2013

Last weekend, we went to Palm Springs. This is all for the spirit of enjoying every time off that Alex has from school and any non chemo fog weekend. We were non stop and had what Alex called a “fitness day” which was tennis, basketball, swimming, and hiking. The swimming included me going down the water slide. I had a moment when I thought to myself that the water was too cold or what if I “banged” my port, but I decided after Alex asked me twice to go not once, but 3 times. We laughed hours later as I looked like a crazy person on the slide. It was worth being cold and the stinging sensation that chlorine caused my non healed wound from my port surgery. We also went hiking in the Indian Canyons which was very special. I used to be a non nature person. Once you have been stuck in a bed for days, your perspective changes. I love my walks by the ocean. Hiking in these canyons which were once a spiritual place for the Indians (or maybe still is), I enjoyed the quiet sounds of water splashing on the rocks in these special oasis in the desert. I loved climbing on the rocks following Alex only to hear his voice tell me, “got to go the other way since it is a big jump”. I loved every minute because I wasn’t with pain, nausea, or other ailments. I really loved every moment since I forgot I had cancer. I didn’t think about this week which was full of tests, but just enjoyed being with Alex and Jim. Of course, our hotel room was given a 2 out of 5 for sleeping arrangements by Alex.

This week flew by since I started with the mammogram, followed by my scan, and then my blood tests. Thank goodness my mammogram was clear and my doc said twice how good I looked. We all know my “look” can be deceiving. My scan was the longest in the history of my scans. I did not appreciate the one technician telling me several times how long it was (as if I didn’t know), but thank goodness for the other technician who was on the same page as me. He organized the parts of my scan according to the parts of my body and broke it down by time (made it seem shorter!). He also had a break where the contrast had to be administered by a nurse with my port. I appreciate an organized person or a task master especially when it comes to the “hold your breath or breathe steady” scan for over 2 hours! I, closed my eyes to see Alex’s smiling face, remembered Jim’s words of love and calmness, counted the banging noises, sang songs to the different tones of the banging machine, counted backwards from 1000 (this usually works well to about 987), and thought about my next meal. I was happy to check it off my list, but concerned about the results.

I went to the cancer center this morning in Newport for my blood work. I love the nurses there. If there weren’t so many people with cancer, I would love it even more. When you are not looking like you have cancer, you aren’t usually “welcomed” in a cancer center. On the other hand,since I have been to the cancer center before, I can usually get away with it because the nurses remember me. My fellow cancer patients don’t appreciate my bouncy funny attitude I have when it comes to my cancer. So, when the nurse showed me that she can access the reports from my scan, I read them quickly to see the conclusion and declared that I have a “mild case of cancer”. It is the same story – my cancer growing in my pelvis having nothing to hang on to and cancer around my liver because it is fun to hang out there. It isn’t a small amount, but a mild amount. This result with my blood work makes a clear picture that my cancer is growing, but it isn’t big now. Of course, my nurse called me a “ticking time bomb” based on my June to August scan which the June was similar to this one and August one was a nightmare. It is all very frustrating as usual, so I couldn’t help to laugh about my mild case of cancer. I cannot describe my feelings since my timeline is still being calculated in my head. I still look at my charts trying to analyze the data to come up with some answers. I cannot find them. My doctor has no new ideas yet. Since my chemo is partially working, I will most likely go to chemo next week. I would feel better with a plan A or plan B. I will see the clinical trial doc at UCLA the week following my chemo. Supposedly one of “defects” on my tumor is a match for a drug in development.

In the meantime, I plan to enjoy my days and I hope you will too. Don’t think twice about dancing in your family room with your kids or husband. Don’t put off  calling your friend or having lunch with your friend. You should never be too busy for just 5 minutes of fun. Make today count because WE ONLY HAVE TODAY.

No plan A or B…so am I a ticking time bomb or not?

January 16, 2013

As usual I always seem to forget how the fog and nausea are with chemo. I get “crazy” as Alex calls it. I think it is so frustrating that my mind says one thing while my body is doing another. Monday was rough and I had my own pity party. As brief as it was, it seems to hurt those around me especially Alex. We both had one of those conversations that ended in no solution. He is worried and I am worried, but we both agreed that it does not help to worry. We also both agreed to enjoy our time that night reading a book together and listening to his piano playing.  We did not say much more about our worries since as Alex says, “the worries come to him in his sleep and cause a bad dream.” We chose to ignore it and talk about the classroom seating. These seating arrangements always focus on the body odor of a girl or boy or the non teeth brushing girls or boys. I also had to laugh that PE was cancelled due to our “freezing” 55 degree weather. Of course, I think about my high school days in Rochester walking to school IN THE SNOW! These middle school stories make for some good entertainment.

I made a plan of being outside in the clear “cool” air as much as possible this week since next week will be filled with scans and tests (too much indoor time). As I was enjoying being outside so much, I kept thinking and even said that I cannot be that “sick” since I am doing what I am doing. Some of the chemo closet people cannot even walk to the bathroom. Of course, the cruel reality hit me as I looked at my scan reports from June to August of last year and saw how much my cancer was trying to win. Such a short time had passed and the cancer was growing so fast. I am angry at this crappy cancer. My doc doesn’t have an answer or a plan A or B. This does frighten me as I hear MD Anderson echoing these exact words about my lack of options. One of my new plans to take another blood test which measures cancer is turning out to be a math problem which my chemo brain required Alex to solve. So, if the number came back at 25% increase over last time, then we would be “in crisis”. Mine came back at 19% just to be really confusing. My doc determined that this was not a real crisis as we all know there is some woman fighting harder than I can imagine who needs his immediate help. I have been that woman over the years. Today since 6% higher was not the outcome, I can wait until next week or even the week after. Part of the reason is that my doc will be out of town at a fun cancer meeting. Another is that there are really no answers. Instead my strategy is simple, just be that annoying cancer patient who is in a “panic”. We all know panic is individual and I have really not had many panic attacks. Unfortunately, my “looking like you don’t have cancer” does not get answers and my cancer is continuing to grow. So, instead I will do what I always do and enjoy every moment (outside as much as possible). This means that the dishes will pile up and the clothes will pile up too. It isn’t important. As I read into my symptoms on a daily basis, I am confused if the issues are chemo related or cancer related. The papers pile up on my desk and I make my decision to watch Alex at tennis practice. I hope you find your fun today.

Back to reality…

January 11, 2013
I still cannot believe it is 2013. Over the break I had some difficult conversations. One main reason was that I didn’t  realize back in August how bad I was or basically how much cancer was in my body. I was dealing with the now and the moment since I was in so much pain, but forgot to think or didn’t want to think about the reality of the situation. I still don’t know how I did what I did in Europe or how I did what I did for Alex starting middle school. Having meetings with his teachers and answering difficult questions only makes me realize how much attitude and your mind can be so powerful or just my drive and determination pushes me forward to be okay for myself, my family, and my friends. Some friends have reminded me not with words, but with actions how important it is to communicate difficult conversations and continue honest conversations with Alex. Your children are always your children just like your parents will always be your parents. I have written my wishes about all things no one wants to talk about, so if I am too drugged or unconscious then these conversations will help I think lessen the burden. I have set up an area of my Evernote with more details, plus have a binder of legal documents. I have had conversations with Alex about his wishes about middle school and even high school and beyond. He is more concerned with growing facial hair than all this “stuff”. I keep telling him that Jim could go without shaving for days and hardly have a beard, so he should not worry about that. The more I have the conversations,the more it seems like just an ordinary grocery list instead of some very heavy stuff. For me, this takes the emotions out of it. The reality of my cancer still is in the back of my mind.

Wednesday, I asked not only one doctor, but two doctors questions that I knew they didn’t have answers to. They told me there is no “philosophy” when dealing with cancer treatment, but pure science. Based on my cancer, if I stop chemo, the cancer will come back. The goal is to keep the cancer in “control” with the most quality of life. As one said,my horse is still running the race, so no reason to change the course. The drugs which were going to be ready for the beginning of the year have been moved to the end of the year. There was a suggestion to add a drug, but I had already had that drug which caused me to go to the ER unable to swallow with horrible mouth sores. This is why it is important to keep a journal of this crap, but who wants to do that…guess I should log the latest and greatest info.
Wednesday, my results of my tumor marker were not positive. I am crushed as I was thinking so positively that this wouldn’t be the case. I guess my “horse” is now running backwards or not continuing the course we wanted. Now, we really have no plan. How fast will my cancer grow this time? Do I have time to take a vacation? I start my time line in my head for Alex-2 more years of middle school and then 4 of high school. Pretty please I tell my body, slow growing cancer, please partially respond to the chemo. My doctor called me on Weds night telling me that I cannot take a break from chemo as if I had thought that was even an option. I am not completely delirious! We have one more new blood test which in combination with the tumor marker may give us a better idea of how fast the cancer is growing. This test is not back yet. As I entered my fog, my “boys” are hurting. Jim and I didn’t sleep much and Alex woke up at 5 with a bad dream. Alex was begging me not to fall asleep last night before he did, but the chemo was taking over.
Since there are no real plans for next steps, I can just focus on the moment at hand which is just to get through this chemo. I do think back to Europe and how much I did when my body was so “cancer-ified”, so I know I can keep going now. Since I am in my fog, I cannot think of much more right now except going back to bed. I want to scream or cry, but my body needs rest. I will listen and face reality again soon.