Archive for September, 2011

Raindrops on roses and whiskers on kittens…getting pick for a trial, am I in denial?

September 21, 2011

I am so overwhelmed with feelings of excitement and nervousness. I just got THE Word that I was randomized to the drug arm of the trial at Scripps. I have two voices playing in my head. One from my doctor saying you can quit at any time and the other doctor saying this is the way to go. I also hear the little voice of the procedure which I am blocking out. I will focus more on the explanation that it is just like a blood transfusion, but longer. How bad could it be? They have ocean view and golf course view! I will be going to San Diego in the next few weeks for a consultation and then the “start”. Once I have my dates, then I must line up all the rest of my UCLA appointments too. Plus, I had to make this lovely timeline to get my second opinion from the panel of experts.

I definitely should eat the See’s candy to celebrate as I almost can taste it. Plus, I am growing some fuzz on my head which I can expect to be a nice short hair cut by winter! So much excitement. I am truly thrilled about tasting food again and I am learning to enjoy my nap times. I cannot wait to stay awake past 9pm!! Now to read the part of the trial paperwork about getting the drug. That should really put me to sleep.

Advertisements

Metamorphosis and Anger Issues

September 19, 2011

I remember in 2nd grade Alex told me about a boy he met who told him that he had anger issues. Last week, I felt that I was that boy encountering everyone and stating, “I have anger issues.” Even children who I have known since they were born had commented that they have never seen me this angry. Have I come full circle to the cycle of cancer feelings? Is it possible that it has been too long in this circle that my VIP nurse from Jim’s work insurance plan had commented that she could not believe that Alex was 10 now. Had I known her that long that she was actually noticing years passing. I guess so! I think it started with my testing week. Each step of this process has been more challenging than usual.  After  feeling the love, I should have known something was strange. I went for my blood test  not taking my usual precautions-beverage in case I have to wait, snack in case I have to wait, copy of the order in case they lost it. Oh, what was I thinking? Haven’t I learned my lesson the first 4 times when I put any confidence in the system, the system fails me. Of course, they did not have the order even though Scripps insisted they kept sending the FAX. After almost 2 hours of calling Scripps, they sent the order by FAX, but unfortunately it was the wrong order. I am so glad that I am a “fake” doctor. I finally got connected with a nurse who sent the correct order. I had no faith in this blood test and heard myself say, “it is okay since UCLA is doing more tests tomorrow.”  I proceeded to get the blood test with only minor bruising.

Off I went to UCLA (4 weeks ago having my chemo), I was feeling a little less nauseous than normal since I knew that I would not get chemo. The faces in the chemo matrix were drastically changed. Some of those who seemed full of hope had bodies bent with despair. In the 4 weeks, their faces had changed so much. It is difficult to close your eyes to those who once smiled at you. I smiled and made some chit chat. The “how are you” question is just too much for you to answer in this phase or any phase of cancer. It almost pains you to say, “fine” when you want to yell, “what do you think?”.  I had the ole battle of the minds with my nurses and they thought my opinion that I would not get any more chemo could not be correct. I was “armed” with beautiful butterfly cupcakes, so the mood was lifted for 5 minutes. I did notice the patient that “no one wants to play with” complaining already. I just read Cancer on $5 a Day which also made the comment that if you don’t know who “that patient” is, then it is probably you. Unfortunately, my blood was taken again and some results still pending. The test that came back showed that my bone marrow is not back in the game. News flash all nurses, no chemo today! We discussed all the plans and I just have to wait to hear from Scripps.

I did recover from my anger issues, but a call came from Scripps that they had ordered the wrong scans. WHAT? Okay, how was I supposed to know as this is the first trial I had “auditioned for”.  Fingers pointing this way and that,and  I am not having any confidence. I do have to remind myself that this is not the person or persons who will be injecting me or “testing” me. Attention to details are what? This isn’t like I ordered a burger without cheese. You would think that more attention would be made. Friday starts with a bang as there are only hours left in the day and I have to get the right scan done. I think I have the order, but Hoag insists that my order is for a MRI? Again, I am a skimmer, but you people need to read carefully. I am not going for a MRI. Finally, confirmation and I run for my scan. I am wiped out. Too many areas leaving room for errors. I still go back to the EKG technician who asked me my job. My job is my cancer job or should I say, my job is to not get killed by the multitude of errors made along the way. I also keep asking myself, what do other people do who have to work a real job or just do not have the energy to focus on all the details.

I ended my day with a call from Scripps saying that this week I will be randomized (to drug or not to drug, that is the question). Plus, a call from my VIP nurse from the insurance told me about a 2nd opinion free plan that offers to get opinions from all over the U.S. to see what else I could be doing instead of let’s say chemo?? It all sounds like I am heading in the right direction, but I would really like to take leave from this cancer job. There is no doubt that my body needs a break from chemo. This is a strange phase of cancer treatment as there seems to be no real answer. I count in my head the number of months I had a recurrence last time. It was 4 months, so that would bring me to December? I go back to my original plan which is always one day at a time.  I will continue to do what I can even if that requires a nap. Alex told me that he had a dream that the cancer “got” me. I told him that I will do everything I can to not let that happen. He asked me why I didn’t know if this medicine had worked and couldn’t I say that it will be gone forever. I want to say that and I want to tell him I kicked cancer’s butt and it is gone for good. I just remind him that I am a fighter and I love him so much that I will never stop fighting ever. This is one promise I can make to him.

 

New Beginnings

September 13, 2011

I thought we had kicked off the year right, but then came the ” snow day” or blackout. Just when I think we would have a full day of school, we have to start the school year groove again. Alex wrote a story of his first day of 5 TH grade and compared it to a roller coaster ride. I could completely relate to his roller coaster metaphor because I am still on the ride. I have had this inexplicable feeling that is an urge of  wanting to do more or doing something other than sleeping 12 hours and taking a nap. All this unknown and all these constant doctor messages of my chronic condition with no answers makes for a foggy brain condition. This condition is the post chemo “withdrawal”. The constant seeking for answers and daily reminders of my aches and pains as a result of cumulative chemo is something that is difficult to explain. Who wants to talk about their aches and pains all the time? BORING? Now,who wants to sound like a 89 years old! I took some of the screening tests from Scripps and my blood came back too low. Who knew I was walking around like a time bomb? Glad I stopped playing with knives and stopped sky diving. One sneeze in my face and bam! So, I will repeat the blood test this week.

I started my week with a scan and news flash for all you scan fans, they changed the beverage . Instead of the sludge, it is now like flavored vitamin water….okay not that tasty but almost. I was feelin’ the love all day. It was as if everyone I met drank a happiness drink.  From the Post Office to Walgreens, I was feelin’ it! At my EKG, I was escorted to “my room” just like checking into a hotel. I highly recommend Hoag Irvine (seriously, it is a hotel). I was given a tour of the common areas by my EKG technician and walked out the door with a smile and a HUG?! So, I will wait for these results and tomorrow continue with my tests. I still will go to UCLA on Thursday to discuss the what-if plans based on Scripps or not. All I know is that I am almost feeling human even though my hair is still falling out. Chemo stays in your system, how long??? I will see what it all brings and I am really fine with anything as long as it isn’t chemo.

I am not really wanting to focus on my chronic cancer, but instead again focusing on what I can do today whether it is picking up Alex at school and being among people, listening to Alex play piano at his lesson, or just making dinner. It is all the little things and they do count. Again, I will remind myself as I see a parent screech their tires into the school parking lot, what is important? It is difficult to re-wire your brain to not do things with every detail in mind and change your every day expectation of yourself. I laugh more often at myself especially when I make a dinner that I would not even want to eat and my family says, “this is pretty good” and eats it anyway! I used to be that person who folded a paper in thirds just perfectly and now, I just fold it to fit somehow….I know with the beginning of school, we are all out of our groove. Try to accept your groove for the day! I am trying and learning that if it doesn’t get done today…oh well! Hard to do, coming from a person who used to check off everything with very little re-writing on a “to do” list for the next day…now, I try to just focus on what is really important to get done that morning, that afternoon, and that is it!