Archive for September, 2010

True Food Kitchen, Sprinkles, and a rainbow…who could ask for a better afternoon?

September 29, 2010

Alex had his well-check today, so we had an early dinner at True Food Kitchen at Fashion Island. If you haven’t been there, you have to try it! I am a fan of any place that Alex would eat an entire salad, plate of colorful carrots (purple carrots!), and a pizza made with flax, wheat, and spelt. Our server was extremely helpful and told me you could order 1/2 orders of different items to create your own meal. I love a place like this as I never order what is on the menu, but create my own special meal. Not sure after our healthy dinner if Sprinkles made sense, but somehow Alex felt that he needed to be sure that Sprinkles was better or not better than Bristol Farms. We had such a great time and on our drive back home we saw a rainbow in between these dark clouds.

On my usual fixation comes the hair or hairs situation…I really want the medical community to come up with a magic potion that helps all these chemo patients grow beautiful hair immediately instead of random hairs on the body. Why do I have one hair under my left arm pit? Not that I need the rest to come in, but does that make sense? I thought I spotted some sprouts on my eyebrows which excited me, but then I looked on top of my head to notice the strangest patch of hair growth and non growth with all sorts of different lengths. Now, I am referring to the 1/4 inch to 1/2 inch or microscopic sprouts and blank spots. Come on, you would think that something can be done about this. Just when you are completely annoyed or medicated beyond belief like I was after my last chemo, you would think they would say, “here is the pill and you will see that your hair will grow back overnight perfectly”. Of course, I am still a prepubescent kid in other areas like my right arm pit etc……very strange! Oh, of course I have a new ailment, eczema since I needed something new as blood counts or lack of were not enough. Oh well. Thursday is just around the corner and I will be back to the chemo closet. I still have that chemo closet smell in my brain and I squint my eyes just thinking about the smell. I even bring a scented soap and candle with me to sniff. I cannot explain the smell, but it isn’t good. I am hoping there will be new chemo schwag since I was unaware of it the last time.  I am just so happy now that I do not have to get the shot that causes such horrible bone pain. I will warn you all now just in case I text you or email you something strange, ignore me!  Now, I just have to find the right outfit!

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Less like a vampire more like a wolf?

September 24, 2010

Okay, slight exaggeration, but I am out of the “woods” with my numbers climbing…there is no need for transfusion, just have to wait until closet time next week. I know I am not quite myself even though I can climb the stairs and not feel as if I have run a marathon. I did fall asleep at Alex’s piano lesson-how embarrassing! He was playing some battle theme to Star Wars, so it wasn’t as if it was peaceful music. I still think my brain activity is not back to normal since  I left my credit card at a store and my insurance card at the lab. I blame it on the missing blood cells or platelets?! I am also getting many calls from the VIP insurance department and my nurse. Do they know something I don’t know? Guess they want to make sure I haven’t used any knives or weapons or verifying that my attitude is in check or who knows. I am definitely not in the mood to talk to them with their series of questions.  The best one is about my anxiety. Yes, I do get very anxious after they ask me the same question over and over. Maybe, it is because of my next week’s closet visit. Maybe they heard about my random texts to a variety of people last time. Did I text them? Ask them to do a report on Cairo? With my numbers up, I plan to exit my house for the weekend. I heard the heat is coming, so my only exit will be to the beach. I know the school year has started and we are all busy, but don’t forget to make the most of your day and try to ignore the little stuff. I am doing better since the “incident” from the other day and I did not kick or bite anyone…yet!

Conserve my Energy?

September 22, 2010

Okay that is a first…who knew that walking up the stairs would be such an activity. Every day I am getting better, but some of you have witnessed, I am still a bit sensitive to people who have NO sensitivity. I know I cannot change those people, but now I completely understand the temper tantrum or when the kids did not have words and they would hit or bite someone. Is it wrong to want to kick someone? I don’t want to bite them or people will start talking about me being a vampire. One minute she has no platelets, the next thing we knew she bit a parent at the school. I need to conserve my energy, but what about THOSE people. The ones that I would laugh about or ignore and now just want to kick, scream, or hit. It does make me laugh to myself to think that I possibly could get away with it. Doesn’t cancer come with a cancer card that gets you out of a lot of situations? I need those shoes, I have cancer. I cannot do the laundry, I have cancer. I rarely use it, but you all know me if people push me to the edge, I may have to use it. I will try not to injure anyone, just a little hair pulling.  You also know that this strange sense of entitlement bothered me before the cancer. I just don’t get it.  I am all about the big picture and being kind to everyone. My parents always taught me kill them with kindness. I think my kindness button is broken at least for today and I do promise not to bite anyone for now.

Magical World of Disney!

September 18, 2010

I am having bit of a blood crisis and feeling  less like a vampire from Twilight and more like a vampire from True Blood. Yesterday, my Doctors phoned me to alert me of my very low platelet count and red count low, low, low. Of course, we had planned to take Alex to Disneyland for his birthday and pick him up early. With hours to spare, I convinced the doctors that Disney was not dangerous and I would not go on any rides that could bump or cause bleeding. They wanted my blood tested yesterday and Saturday as I was in the transfusion range. This is why you cannot have chemo forever. The body just cannot handle it. Of course, they told me that there is a new “shot” coming out for red blood cells just like the one I get for white blood cells. Unfortunately, that does not help me now. Since I had never had any issues with my blood or issues that would require a transfusion, I was convinced that my body would do some magic and be able to get in a rising range to avoid the transfusion. I was a total wimp getting my blood taken. Even on Thursday, feeling like I was witnessing a horror film and feeling way too much pain for a needle prick,  I cried. Of course, the person taking my blood starting almost yelling at me saying that she was using a baby needle. Do I care? I swear! So, I had the blood letting one more time before we picked up Alex. Off we went to Disneyland, waiting to hear whether I would spend the weekend like a vampire getting “the blood”.  So, why is it that when I am in a fragile state, people are almost knocking me down while walking and texting. Isn’t that illegal in Disneyland?  Also, why does it seem that half of the visitors are smoking 10 packs of cigarettes. AND to top it all off, I get an ignorant teenager interviewing me about chemo and cancer when all I want is a Guest Assistance pass to ensure my visit to Disneyland is without incident. Of course, I ended up almost in tears at Disneyland out of stress and frustration and wanting so much for Alex’s birthday celebration to be “normal”. Of course, this is my own issue that I have to make things as normal as possible. I should have gone wig-less at Disneyland to ensure a smooth visit?!  My wig kept coming unclipped for some reason, so I had visions of a tall person clipping my hair with a pin necklace pulling the whole hair off. We have never purchased so much snacks at Disneyland, but Jim needed to check the phone, call the Doctor for messages. This worked out great since Alex never gets to eat such crap anywhere. I could not give into the cotton candy, but did give into some Mickey ears with his name. We finally did get the call, that the platelets were rising. Yipee! No transfusion. Of course, the rest of the blood counts are completely out of whack now and not near normal, but I have 3 more days of my window to make more magic happen.  We had a great time at Disneyland as normal as normal could be! I am sure some magic pixie dust will do the trick for the next 3 days.

This morning my Doctor called to tell me to still take it easy and avoid using scissors, knives, jumping, bumping etc….He is talking to the wrong person since I have always been and will always be a klutz. Oh well!  So, by Wednesday, I am hoping all is staying in the right direction.

I am still horrified at my missing time at the chemo closet when I sent some of you texts and emails that made no sense. Alex is still laughing at my request of his babysitter to help him do a report on Egypt. I have no recall and I even found notes on business cards that people had given me in the closet. Jim told me that I was talking to everyone and had this bug eyed Nancy Pelosi look asking all types of questions and listening to my fellow closet members. Who knew? Except that the cards had these strange notes on the back with words that are not giving me any clue. I hope I did not make any “dates” or promises to people as I was under the influence. Jim reminded me that I kept asking him about our new car? I do not like missing blocks of time, but I guess I needed to miss the time for the chemo to happen…..My next activity is to schedule my next scan which I have been avoiding. I will do this next week and then the last day of September begins my short visits to the closet. Yipee! Until then, I will avoid skateboarding and boxing for a few days.

Fog is clearing

September 14, 2010

My fog is almost cleared, but don’t quote me on it. I decided (who knows why) to take off the patch that they gave me for nausea. Of course, today without the patch, I am nauseous.  It just figures! I am definitely better than last time, but somewhere in between last time and the first time. Yes, chemo is cumulative and I want my eyelashes back! Of course, my desires for food are nothing in the healthy category, but things will get back to “normal”.  Of course, I always try to stay with the routine and pretend like everything is “fine”, but today seemed more difficult than usual. While Alex was excited to tell me every detail of school, I felt like his words were coming out in another language. I know this fog will lift as they always do, but feel terrible that I am not 100% here or there or anywhere. I try not to think about all the details and focus on the here and now even if I am foggy. I appreciate your kind smiles and laughter. All of your words of encouragement keep me in the now.

No Texting or Emailing during Chemo pledge

September 11, 2010

On Thursday, some of you may have received some very special messages from me. Well, right at the beginning of my “infusion”, I started feeling dizzy and nauseous, so luckily my cousin, Margie and Jim became my voice because I thought I did not need anything. After much added drugs, I was loopy beyond belief.  I told Uma, Alex’s babysitter to do a report on Egypt, and then put p.s. Cairo?!? Who knows what I was thinking. I told Alex that this is your mind on drugs, not a good message since I could not remember what I just said 2 seconds ago. I sent text messages to many of you and sorry if they sounded strange or weren’t even sentences. I could not eat, but stuck to my pledge of drinking, I think? I even embarrassed my doctor saying he look more fashionable with his other glasses. He turned a bright red. Of course, I think I kept saying more and more, but he kept telling me, let’s just worry about this right now. Whatever the “this” was. Jim was trying to get me to stop texting, but you know how good of a listener I am when thinking I need to do something. I don’t even remember getting to the car or going to sleep. I took more drugs and insisted upon walking Alex to school and walked up the hill. I got my shot and acupuncture and was so nauseous that I could not eat, but was still drinking. Friday night, I could put the magic patch on and I think I ate something. I am in too much of a fog now. BUT, this is the last long bad one and the rest should be easy, right? I did eat a little something today, but am still drinking. No worries here as I can put my weight back on in a minute once the nausea stops and my head stops spinning. So, I am back to bed now……..

My connect the dots gone!

September 9, 2010

Why oh why? First day of school with maximum exposure to people and my connect the dot hairs on my eyebrows are gone! These hairs could not wait one more day until the chemo closet where everyone has zero eyebrows and most do not wear any wigs! Typical! The first day walk down the hill was especially fun with the misting rain. Of course, I did not have an umbrella and was wondering about my wig with this hair. They told me to wash with a comb and now I was risking my one good accessory to go frizzy and crazy with a little rain and exercise. Alex’s Principal found it very funny that we walked to school and said, “only you, on a rainy first day would walk, take a look at all these cars!” Alex’s class is great with a great teacher, so I thought we were off to a good start.  The walk up the hill seemed to go well for me except that I can barely move my legs now. That hill always gets you in all these crazy places even if you are in the best shape.

Alex came home to tell me while having some asthma and coughing that his peanut free table was surrounded by peanuts or as he called it, “peanut warfare”. One more thing to add to my list along with all these papers that need to be filled out. Luckily, I did the priority papers first because now after all my pre-meds, I am more loopy than ever with no memory of even my phone number! Forms are not meant for medicated drug induced people! I kept on putting little smiley faces on some of the forms where I put the wrong info and crossed it out. Oops! With all this, we managed to have a great dinner until I looked at my chest and saw all this strange bubble lumps. Of course, I thought it was a strange reaction to my drugs, but it turned out to be drips of honey. Typical!

Who knows what the chemo closet will bring, but you know I will bring my attitude and my show and tell ipad AND try to keep smiling. I haven’t picked out my outfit, but it will be good. I did buy some Gelson’s cookies to bring. I hope they will be enough to get me upgraded to the best chair since my appointment is too early for Diddy Riese. Of course, I will ask AGAIN when they are upgrading the whole closet!! I did find out from my cousin Margie, that one of my doctors will be on the Stand Up 2 Cancer collaborative cancer research show. So, put your DVR on, so you can get a good look at one of my doctors from UCLA. The show will be on Friday, at 8pm on all networks. I do like this organization since they do a lot of research on all cancers. This organization is working on a drug even better than the one I will be taking for a year which is the latest and greatest type of cancer treatment-exciting stuff.

Everyone have a great day tomorrow and I will be feeling your positive vibes! You can always text me or email me as now Jim got me a newer Droid. (apparently, the one I had was not that great) If only the real internet would work in the closet, I would be much happier. Maybe, the music will be back? OR I will get a visit from the chaplain for some other entertainment? OR maybe they will have more chemo schwag! Anyone need any lotions? I also plan to visit the snack bar as an activity! Such fun to be had! Seriously, I appreciate all your messages, calls, and notes more than you will ever know!

“Stop living life for what’s around the corner & start enjoying the walk down the street.” Grant Miller

September 8, 2010

I saw this quote inside my Honest Tea while drinking it! Who knew they put little quotes on the back side of the label. I think it was a message to me as I was planning my weeks ahead just in case. I cannot help myself!  Since the doctors have no real idea of what will happen this time, I thought that I would plan especially since Alex has his birthday in September and school starts and it is the Jewish holidays.  I ordered every Jewish holiday dessert just in case one sounds good, plus I ordered the meal from Gelson’s because I am not cooking.  Well, just because I am planning ahead does not mean that I will not enjoy the walk along the way. Speaking of walking, I will be walking Alex to school tomorrow. I just hope I can make it back up the hill! It has been a long time. I figured it was a good idea since I will be sitting in the chemo closet on Thursday for 8 hours! I also have a new plan of action for the closet (besides picking out a cute outfit with all accessories AND trying to be as cheerful cheerleader as possible). I am going to drink all day (no, not tequila, but it is a good idea), so I get up and visit the bathroom a lot and try to flush the junk out. Last time I was too nauseous to drink and think that may have caused more issues for me. This is my theory and I am sticking with it!

Back to my hair saga…I definitely jinxed myself as I actually had noticed some teeny tiny hairs on my leg. Come on, leg hair and what about my eyebrows or head or eyelashes. Now, some other areas still remain hairless. I am baffled on how this all works and what grows back and why? Plus, will it all fall out again after Thursday? I was convinced with the help of a friend that I should not worry about the head since my wig really does look real and almost better than my old hair. Very true, but it is puzzling.

So, I will enjoy my walk down the street to school tomorrow for Alex’s first day of 4th grade. I will enjoy it much more than you all know because I am going to walk down the street! Now, if you see me walking up the hill and I am waving to you a little more frantically, please stop and pick me up! Happy New Year to all my Jewish friends, L’shanah Tova and may we all have a sweet and HEALTHY New Year!!

Time Warp!

September 3, 2010

So, since I was in bed for 2 weeks after this last chemo, I was in a time warp of some kind! I definitely lost a week and blocked out the fact that next week I go to the closet once again. I was reminded by Jim and my family, but somehow still chose to ignore the reality of the calendar. Now, I am back in the game, but frustrated that I am not where I was before as far as strength and not mentally ready for the closet. I put calls into my Doctors for a better plan and Jim has done the same. We are happy to receive some answers tonight with a plan of new drugs that are exclusive offerings at UCLA-love the drugs!?!  I also went to UCLA this week to get more answers about “the plan” for the year ahead.  (By the way, the nurses and Doctor noticed my “track” marks on my arm and were confused as to how this happened. Who knows?) I got the plan and my Doctor  was full of positive thoughts and kept repeating his own mantra (not sure if it was for me or for himself) that he is going to make it all go away and his plan is going to work! I agree, but still do not want to think about next week even with more drugs! I have to repeat the mantra that this is the last long one and I will only have a short visit to UCLA starting 9/30!!!

Now, you all know how possessed I am about my eyebrows? Well, Alex told me tonight that my hair which seems to be sprouting all sorts of strange sprouts is looking very strange, but that I should not worry about it. I don’t understand how this all works. Why aren’t these hairs growing back on the brows which are conveniently located just below the hair line? Okay, I should not say anything or most likely I will grow some strange sprouting mustache! I finally figured out that I have no nose hairs, not that I noticed before, but was wondering why my nose was running all the time. I found on a chemo website that these hairs stop the running nose or chemo causes it.  I cannot help my fixation on all hairs or lack of hairs since this seems to never follow any normal pattern. I just hope that the grow back period does not cause any major hair growth in all the wrong places like those tufts of ear hair that old men get!

I am thrilled that my Mom who ignored my time warp disease is coming  next weekend and we are planning on going to True Food at Fashion Island, the new restaurant developed by Dr Andrew Weil.  Since I have no taste buds, I am sure to enjoy the Kale salad and some other natural elixirs! I am thinking that since the “team” at UCLA has a new plan that I am not going to have the same experience as last time AND I can stop at Bristol Farms for a cupcake. Yes, Sprinkles is there too, but Alex, my cupcake taster, thinks that Bristol Farms are the best!