Archive for June, 2010

Until the next appointment

June 30, 2010

My appointment at UCLA went well. It was especially reaffirming when my Doctor agreed that the chemo closet was in fact a closet. He said, “they really need to change that room. It is really not the best place for recovery.” Glad, that someone of authority agrees, so when are they going to move this closet? Soon, but how soon is soon? I am sure I will see the new and improved closet. Before my appointment, I went to the shop with wigs, hats, etc…because the “brain constrictor” that I am wearing under my wig is not only cutting off my circulation, but is the source of all my brain issues! The girl came up with another idea which was a cotton thing, hopefully to improve the circulation.  I asked her what do people do who have chemo and work out. She responded that it is her experience that not many people “work out” during chemo, but she did show me an idea of what I could do.  The summer here has barely started with the heat, just cloudy and barely hot and I cannot even do a walk without my head sweating. I am not sure if it was the combination of the “brain constrictor” and the hat/wig, but it is not working for me.  I am going to try things without the “brain constrictor”.

Back to the Doctor visit, he reviewed while sitting with us the PET scan and told me to “fire away” my list of questions. All questions answered within minutes and report reviewed to say that it is what is to be expected, but he would get us a copy for our records because he knows we love reports. Don’t other people ask for a copy?  He did give us the good news that for our vacation in October that I can do my chemo every 4 weeks. I am so looking forward to that because it starts again next week and I barely have enough time to do everything I want to do! We read the report which we found a bit strange since it said that some images were limited by my breathing. You would think that they would know this while they were doing my scan, so we would not waste my time. Okay, minus one point for UCLA radiology. Next scan, I now know that I want the person who actually has the skills to do a PET scan correctly, so that I don’t waste my time. The real test in determining how I am doing with the chemo is the fact that the lizard baby is gone. Most people have the lizard for 2 months or so, but I lost the lizard right away. The Doctor and nurses enjoy the lizard baby story and even the nurse asked how I was feeling without the lizard. All I can say is if I just go about my day and do the things I want to do, I feel just as I used to feel. Unfortunately, the chemo closet is what makes me better, but what reminds me that I am not well. This is why I get dressed up, laugh, make my jokes and try to make time go fast in the closet. Until then, I will make the most of my days! I will attempt to go to the gym today without too much sweating!


I have a voice

June 27, 2010

Oh yes, I have a voice again. Instead of the emphysema/smoker sounding voice, I sound like myself. I guess it wasn’t enough that I am a walking ad campaign for how to live with cancer, I had to be sounding like I shouldn’t have smoked for 30 plus years just to get the word out that smoking is bad for you. I also came to realize with my moment of clarity that I may have messed up on my drugs again, but hey with such a pharmacy at home and even multiple lists and spreadsheets, it is bound to happen. I always wonder about the rest of the people! You have to be organized if you have cancer or is it part of the requirements? Not organized, I’m sorry, but  you can have another ailment or illness because cancer requires extreme organizational skills. I am so thrilled to be able to use all my previous job experience at one time, from my Club Med dancing to my management skills. I am certainly happy to use the Club Med skills, but if only I had a Doctor who spoke French, then I would be covering everything. In the meantime, I will start my Italian. Tomorrow, we are off to UCLA and we will be ready with a list of questions. Most of the questions, we usually decide not to ask because it just doesn’t matter, but it is nice to say it aloud.  We will be off to Dana Point in a little while to enjoy our walk along the rocks and visit Coffee Importers for a snack!

Everyone smiles in the same language

June 25, 2010

I am happy to report that despite my numerous ailments which change daily, my dental cleaning was excellent. The best it has ever been and I was overdue. So, again another benefit of chemo, great dental check ups? I am also finding the lack of hair very useful for the summer. No pit paranoia, just nice and clean without any concern for hair growth, just a bit of concern for the exposure of my chicken arms. With the morning June gloom clouds and my early rising (still have to watch for the scores of World Cup live for Alex’s ongoing bet with Grandpa), I am usually limiting my sun exposure. I haven’t quite figured out the hair situation as I definitely need a head band since hats will be too hot. These logistics I usually put to the side for more important things like spending time with Alex. It is still the details that seem to be processed more slowly for me until I gear up in week 2. As I live in the present, I find I am more appreciative of everyone I encounter whether they open the door for me or allow me to go first (who knows why, simple kindness goes a long way). I am so thankful to feel halfway decent and to enjoy holding Alex’s hand (while he still lets me).  I know these new ailments will just be little annoyances that I will choose to ignore or deal with and find great happiness in today!

Doctor, doctor, give me the news, I got a bad case of lovin’ you

June 24, 2010

This should be called, “nurse, nurse” as in my MALE nurse, but I don’t know a good song about a nurse! I am never the one to wave the white flag for anything and today, I decided to give in to my variety of ailments and phone my nurse. Now, I don’t recall if they did some type of personality evaluation of who you are and what you need in a nurse, but somehow my nurse is a perfect match. Not only did he try to scare me to listen to him, but almost yelled at me so I actually did listen. He did this with the most delightful accent which I am still trying to place, so all I could say was “yes” and “yes”. Yes, I do make a terrible patient because remember in my mind, I am not “sick”  or as Jim says, you have a “little cancer” which sounds like I have a little cold sore.  All I can say is that I did skim over the list of side effects and even though I keep a detailed journal of every little ache and pain, I still choose to ignore most of them. Luckily, my nurse put me in line and I promised  to hear and obey.  I will be consuming high calorie good fats and good foods, but somehow my mind keeps drifting to donuts, but I am not telling him that!  Mom and Dad were happy that I finally listened to someone and I happily ate every morsel of my roasted chicken while celebrating the day. The best part of my meal was hearing the laughter of my Dad, Mom, and Alex while Alex was making Grandpa do the Ice Freeze dance?  The other favorite part was annoying our waiter and Grandpa telling the waiter that he only gets out on Fridays, but we had to tell him it was Wednesday. I am smiling and “obeying” at least for a week until I am attacked by a donut!

The fog is lifting….

June 23, 2010

I am not sure I will consider this chemo phase a routine because I am continually surprised by how it works in my body. Today, I had to have pancakes, so I cooked them myself without any nausea! Yipee! I still had the pains of “working out” with my chemo and was moving slowly, but when lunch came around it was as if a switch turned on or off for that matter. I was more aware and my appetite was back. I cannot explain it, but it is as if I am in a tunnel and I cannot hear anyone or process anything. Then, wham, out of the tunnel! I am not quite back to my post phase, but am able to do a lot more than yesterday. I really understand the value of the post phase and most likely push myself beyond what I should, but you all know I cannot stand to sit still and cannot stand to let myself be a blob. It goes against who I am and what I want to do every day. I think I did watch some movies and some t.v., but who knows what I watched. If I sent any of you an email, I hope I made sense. I really look forward to tomorrow and cannot believe it is the last day of school. The weather is perfect now in So Cal…gotta love it! So, happy summer to all the parents-yipee no more lunches or getting up early! I hope like me you will make the most of your days and not stress the small stuff!

Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all. -Emily Dickinson

June 21, 2010

Here continues my time warp of post chemo fog where I am Dory in Finding Nemo except I feel more foggy than Dory. I hope to wake up out of this fog, but I am moving in slow motion and not recalling what I was intending on doing in the first place. Yesterday, I even did my yoga and ate some food, but was in and out of the fog for most of the day. I gave into the whole process since it was without nausea, but had a brief moment of frustration when I wanted to get out of bed and get going. Who knows where I thought I was going, but it seemed like I should not be sleeping on/off all day.This is something that I am not used to and I will give into the new routines each time I get a treatment. I will take anything over the nausea except that I feel hungover and not quite knowing what to drink or eat to eliminate this feeling. I know tomorrow will be even better as I came out of this fog last time and it was as if nothing had happened. I look forward to my head being all clear tomorrow. Until then, I will try to remember what I was going to do before I started typing?!

Chemo Closet Round 2

June 19, 2010

Yesterday, we started with the 3 accidents on the 405, but we managed to leave early enough to get there only 10 minutes late. I arrived to be greeted by my nurse who did not introduce herself, but first told me that I will get some pre-meds to make me nice and sleepy. I responded that last time it had the opposite effect and she seemed to be disappointed. After we entered into the closet, I had 2 end chairs to choose from, but remembered from last time that the one she wanted to put me in was broken. She assured me it was fixed. She also reminded me about the 1 guest at a time rule and also asked me if we had enough “stuff”. I told her that since I don’t sleep, I had my kindle, but without internet, I had my phone and some snacks. She looked at Jim’s work bag and shrugged her shoulders. I added that I did not want to sit in the other chair next to the bio waste since my cousin would not visit me. I think then I started to get my look of here we go, I am not happy and Jim gave me a look and I am sure I said some stupid things. Of course, she had to say, “if your husband is stressing you out, then he should not stay or something like this.” I told her that she was stressing me out after she told me that I cannot be agitated or talk loudly or be stressed and again offered Jim up for leaving after telling him he needed to be so many feet away from the water cooler. At this point, I started crying while at the same time telling her that I am not agitated, but I am animated and this is my personality which I have had all my life. Again, I told her that my husband was not stressing me out, but she was. After all this, I calmed down in my seat that was so close to the next person that we could hold hands. My neighbor was definitely NOT in the mood for my animation or loud voice or my outfit which I must say that I did look cute! I did see the sallow faces and the sadness, but I was not going to be part of it. I started the day before I sat in that chair smiling and was determined to end the day with the smile. Somehow my nurse and I made up. She is a rule follower and not used to me. She did continually say at the nurse station to the other nurses, “she is still talking”….I did notice that many of the closet members were mouth hanging open and snoring, but if I caught an eye or a look, I made “contact.” I smiled and offered to unplug myself to get something for my fellow closet members while I had my one visitor at a time. The chair next to me had 3 members during my over 8 hours. I definitely should get some commission from Amazon or Apple. I did show and tell my ipod and Kindle to many closet members and made one woman laugh so hard with my silly stories about my hair and the benefits of not having hair. So, even though there were some bumps in the start, I heard the stories about my nurse’s 9 grandchildren, her son who passed away, and she gave me lots of information about taking the medication for the upcoming days. I was the last one out of the closet and I was still smiling. My nurse and I ended the day with a hug.

Today, I felt pretty good, but the one medication turned off the nausea (yeah!) and also turned off my appetite. I will take it happily. I was happy to go to Alex’s Reading Olympic ceremony and his principal kicked me out and told me to stop talking, so I could go to my doctor to get my shot. I also received a call from the genetics doctor who told me another one of my genetic tests came back negative. So, “Genes Gone Wild will have a sequel and have more cartoon looking genes with laughing faces and doing the tambourine dance. She did tell me in her 20 years of working with cancer patients, the attitude is what makes a difference and she knows that I will be just fine. I know this too! So, who knows what tomorrow will bring.  I am still running this “marathon”.

New fashion look continues….

June 17, 2010

Thanks to all my fashionable friends and family and some incredible valuable eyebrow advice from some experts (who have incredible eyebrows!), I am getting almost in the groove with the new look. I will now need a hat rack or something to hold all my hat purchases. I guess I am not saving any money now with hair cuts versus new style! I am still not quite used to it, but have to say when Alex’s tennis coach told me how great I look with his very nice Brazilian accent, I gotta say that I felt pretty good! Today, not only did my parents arrive, but 2 boxes of  wig type accessories. This will definitely be a full day project which I do not have time now. My Mom noticed how great the house looked and I told her this is my chemo nesting phase. I do enjoy a nice clean downstairs (notice the emphasis on downstairs), so there are a bunch of piles in the loft and in my bedroom along with a mini pharmacy! I do love  my downstairs because that is usually the only “trip” I make the day or 2 after chemo. I have some good intentions like walking outside around the block. I am much more confident that this time will be much better with my new drug organization even though I messed up for my tomorrow schedule, but I will have 8 or 9 hours to get it organized at UCLA’s fine chemo closet featuring mini bar and snacks.

Hope everyone enjoys the great weather we are having…love the 70 degrees days!

Thanks again to my very helpful and stylish friends and family who make me look good!

Ahoy there matey!

June 16, 2010

This morning I was greeted by Alex with, “Ahoy there matey!”  Now, I went from Pilgrim to Pirate overnight. This wig thing requires a bit of training. The just out of bed, toss on your hair does not work for me. I give up after the first toss as I look in the mirror and see crooked hair, so back to the bandana (Pirate or Pilgrim look). At least this year at school, Alex did not learn a pirate poem, so he usually reverts back to reciting the Pilgrim poem when he looks at me. Today, I attempted the other thingy under the wig, so I would hope to not have the throbbing temples by the end of the day. I still have this strange feeling that it will come off or get crooked or a giant gust of wind will come over the canyon and poof…bye bye real hair wig! All was safe and I went off to my acupuncture appointment for my pre-chemo treatment. I felt great after the appointment and then, had physical therapy. This pre-phase for chemo is what I call my “chemo nesting syndrome”. I get everything organized for myself physically, mentally, and plan for the days that I am in my time warp. I know that I am in the best place I can be. I also know that I have such a great team including family, friends, Rabbis, Cantor, doctors,acupuncturist, physical therapist and more who keep me smiling every day. Today, I even received an email from one of my doctors who is in Munich wishing me well for Thursday treatment.  Tomorrow begins my medication phase which I now have much more organized this second time. My second wig is proving to be too challenging for me at this time. I cannot quite figure it out, but will work on this eventually. Alex informed me that wig is his favorite, but I told him that I am going to need some training for that wig. Not really sure where I can go for this type of training, but I will figure it out. Until then, Grandpa and Grandma arrive tomorrow! p.s. No temple headache today, so I must be doing something right!

Off to Plymouth Rock…

June 15, 2010

Today was the goodbye to hair day…enough of the clumps, strands, YECH! I had a very brave, loving, understanding person do the deed, and you would be happy to know that I have a beautiful round head. There are no weird spots or bumps and I do not have a cone head despite some belief that just because I came out that way, it is still pointy and had been covered up by my curly hair all these years. Nope, it is nice and round. Now, the wig part is not as easy as it looks, but I thought the best way to have a full experience would be to take Alex out of school and go to Disneyland. Jim came too and thought it may be a good plan until we saw the zillions of people. We made the most of it and went on a few rides and enjoyed the day together. I think the wig was squeezing my brain because all I could think about was my throbbing temples or was it the heat?  Either way, I need more training. So, I came home and due to the size of my small child’s head (when in Europe, I needed a hat and somehow I was always told that I should go to the children’s department), the bandana that I had fit just fine by tucking in the back. Of course, tonight Alex told me that I looked like a Pilgrim ready to go to Plymouth Rock. I was thinking I looked more Amish, but he could be right! Either way, more experimentation will occur in the days to come.  I would rather look less like a Pilgrim in the upcoming weeks!