Archive for November, 2010

Doctors who care….

November 27, 2010

On Monday, I had an appointment with one of my “main” doctors who looked very tired and was very intense. I should have known something was up after some tests and an ultrasound which I had an audience of 4 doctors who all said they were very sorry about my 3 primary cancers.  I guess that comment is as good as it gets. I never know what to say except, “thanks”.  I think I have entered a different phase of cancer since my PET scan was clear. My doctor’s approach was the “did you hear me” and “wake up to reality”. Little does he know, I am always thinking and I do listen to everything-what people say, what friends & family say, what doctors say, how my body reacts and what the medicine shows me. I could tell from what he said is that statistically the odds are that it comes back. I did tell him that I am not a statistic, but he had to remind me of his experience. I did hear him and he did spend a lot of time telling me what to look for and gave me his cell phone again to remind him to call him with any question or concern. I know he is concerned and it is his job,and  he did go above and beyond especially in the reality department . I was happy to know how much he cared, but not enjoying what he had to say. He also wanted to remind me that I should continue with my treatment no matter what and to “make it happen” whether or not I have an allergic reaction. I do hear him, but it does not make it easy. It is not as if I am avoiding the reality, but more living in the now and what is happening today or this moment. I cannot control what will happen and I know that I will listen to my body and am aware of anything suspicious. The only thing that I thought about was where to go to have some fun after this appointment. Of course, Disneyland was the place to go especially if you have cancer. I was reminded why we never visit Disneyland during the holiday time because it is crazy! Using the cancer card at Disneyland, I enjoyed one of  the benefits of having cancer. (not that there are a whole lot of benefits except being hairless in summer… having little hair in the winter is not as fun)  I also had great pleasure in completing another “review” of the chemo closet. I am hoping the strong language I used could have a bit more impact on expediting the road to the chemo closet makeover. Yes, it is that time again and next week I go back to the closet for some reality. YECH! Until then, I have Hanukkah shopping to finish and a book fair to get going. I will be busy, but not ignore the reality of the situation. I will continue to make the most of my days even if sleeping more is part of the program. Happy weekend and only a few weeks until the no packing lunches, sleeping in happens again……


Almost like ole’ times…almost

November 18, 2010

I am happy to report that with half the dose of pre-drugs from my last treatment, it wasn’t all that bad. Of course, I would rather not go to the closet since it is still disgusting. After all these visits to the closet, I had a new nurse who had the idea of slowing the drip down for me so I could actually focus and avoid the wave of nausea because as she said, “you are a small person.” Guess no one ever bothered to look at me and thought the faster the better, so I can have the most side effects possible. I guess I need to have 13 more visits to get this whole routine perfect. This nurse also made me laugh as she gave me a very convincing look that the closet will undergo extreme makeover by 2030. My cousin, Margie and I were equally as entertained by the office worker who was extremely focused on putting the rolling stools away, and I guess she did not notice the darkness, stink, and ugly broken chairs. Hmmmm….glad she was focused on making sure those stools were placed perfectly among the rolling drawers of iv equipment. We also found the doctor’s comment about losing his car based on his bets on our cancers pretty funny too. I think we should collect on this bet as Margie needs a new car and we could use a vacation home!

Back to my normalcy, I did manage a walk or two this week and going to the gym almost like my old self. Of course, when I have my wig squeezing my brain while sweating, I am reminded of my situation. I am also reminded of my routine of taking pills or not taking pills or getting refills or organizing the pills or making my list for the next doctor visit. I am tired of it and have to say that I am not loving this routine. I am especially loving it less when a friend reminds me of how her life is overwhelming only to realize that I would trade her overwhelming moments for mine in a second (Note:  You are all entitled to be overwhelmed with the baking, cooking, cleaning, setting the table,and  the timing of the meal for Thanksgiving).  It is usually when I catch my breath or feel like I almost like my old self that I get a little “tap” on the shoulder. A call to remind me of a  doctor visit just around the corner (yes, Monday-don’t these doctors celebrate Thanksgiving?!) or a medical bill arrives from service that was back in April and I am forced to pull all those papers out again and re-read all that foreign language again. And yes, I am still puzzled by my hair re-growth. I cannot help it. I am happy to report that my eyebrows are coming in despite the perpendicularity of the hairs. It is official, I now have old man eyebrows except they are dark brown.  My hair on my head has become entertaining as I pat down the stray hairs or think I can comb them with a baby doll brush (too bad I threw Alex’s baby brush away). I definitely have given into the fact that this wig is my new friend even if it squeezes my brain. I am thinking at this rate, my hair will not be even a short hair cut until one year. So, I can now focus on the random hair growth over my body which I will need one of those full length magnifying mirrors. Do they even come in full body length?

I am tired, but very thankful. Thankful that this all seems to be working and thankful for the wonderful support of family and friends especially those who keep me smiling and laughing. The rest of you, you know who you are and I will come after you…after Thanksgiving! I know these days are busy for everyone, but slow down and give a friend a hug or really listen to your kids or your family and enjoy every minute (give or take some seconds).

New Trader Joe’s mini cupcakes and cake pops can get you through any day!

November 12, 2010

Recipe for changing your mood even when on heavy duty steroids facing your future day in the closet: 1. Have special friends make you cake pops. 2. When you have consumed all the cake pops, go immediately to Trader Joe’s for a 9 pack of mini cupcakes-they are new. (Yes, I said 9!) They are perishable, so you may have to consume one of each type. I don’t know if you have heard about the cake pops. You cannot help smiling while you are eating them even though I have been told by some expert bakers that they are not as easy as they look to make! They can sure give you a moment of happiness especially when they are baked with a lot of love and positive energy (which is perishable too, so you must consume fast). You can check out the website by Bakerella if you want to attempt to bake these fun treats. After this recipe, you should avoid any heavy lifting including laundry, cleaning, and paying bills online.

This recipe is working for me since I am now reminded of the “yech” that I feel when I take these drugs, but I am also reminded of my clear scan. I am counting on the reduced drug plan working as I plan to consume some apples in Oak Glen, but in a donut form. Yes, it sounds a bit like I am on a celebration of food, but I did miss the October apple picking, so I have to do it now before snow comes to that area, right? Then, I will avoid the donuts at Hanukkah which is WAY too early this year! Have a little turkey and a little latke around the corner. Since I will be going up to UCLA during Thanksgiving week, I am sure my nausea memory will impact my turkey consumption and possibly my pie consumption, so I definitely need to consume early to offset this issue.

Most importantly, I have no outfit picked for tomorrow. I am close to picking out some work out clothes, but you all know I won’t give into that faux pas! Chemo closet is my Project Runway or Closet Makeover edition, so I have to keep with my plan. I just hope that I get a chair and not a folding chair since I am 30 minutes later than last time. My cousin Margie was thinking of bringing a folding beach chair. Wouldn’t it be funny if I arrive with one of those Costco beach chairs that are carried like a back pack. Just a thought….maybe a cooler too and maybe some toilet paper, paper towels?  Okay, I will go back to finding the perfect outfit. Weather looks perfect for the next days, so get out in the fresh air, breathe some ocean air in for me as I know the chemo closet has the stink air. Have fun and take care of YOU!

“We cannot control the cards we are dealt, but we can control how we play them.” Dr Oz

November 10, 2010

It has been a while since I reminded myself that there are many people fighting their own “battle”. It is all relative and no “battle” is easy no matter what hand you are dealt. What I cannot understand is those who are on the pity pot. We are entitled to our moments. When it is the same ole’ song playing over and over and the song is playing the same notes of caught up in the little things that do not matter, I usually smile to myself . When the song is sung by the same people month after month, I am just on the edge of  screaming, “does this really matter? time to get off the pity pot”. Seriously, I want to yell, “open your eyes or your mind or something”.  I know it does not help to yell, but what about a gentle slap in the face or just a little shove. Not to push the person down, but just wake them up a bit? I mean I am tired of hearing myself repeat my every 3 week story. I really don’t like the selfish aspect of cancer. It is all about me and I am wanting to get beyond the “me”, but it is the numbers from my blood counts, the drugs that are 2 pages long, the supplements that are 3 pages long, the list of what to do and what to eat and what to write down, the doctors to call, the doctors to see, the doctors to email, the insurance (I think I lost my VIP status with my constant upbeat phone calls and giving advice to the nurses who call me, granted it is vacation, shopping, dining advice, but somehow I think I got demoted) and did I say insurance?  It is annoying. What do other people do who are not organized?

Enough about me, but did I tell you about my eyelashes? I put mascara on with a little success even though the lashes are not quite long enough. Wasn’t  it Tammy Faye Baker with the caked on mascara? I am dreaming of getting my mascara on my new eyelashes almost like Tammy Faye.

Back to the closet I go on Friday and I am now down to half the over drug dose of pre drugs that I had the last time which is reason to celebrate besides my all clear on my scan. I still am not looking forward to Friday and the thought of the smells and sights already make me a little nauseous. I think I will focus on the happiness of sleeping in on Thursday since Alex is off from school. Again, I will remind you to make the most of your days and enjoy your time with your kids and your family, laugh a lot, and ignore all the little stuff that annoys you (or try to!).

Great news and looking forward to the best night of sleep ever!

November 6, 2010

Today I called all my doctors to get the results before the weekend. I left messages and did talk to my internist’s nurse who said the report had arrived, but she did not look at it yet. So, I kept phoning and getting a bit more nervous (all for nothing!) and just when I took a deep breath and convinced myself that all is okay, the phone rang. My doctor told me the news that my scan was clear. Everything was clear, she kept saying it over and over, but I was in shock. I asked her again and again about the area over my liver that all the doctors were concerned about and she again repeated that “it is gone” and “all is clear”. She waited until I repeated it back to her to confirm that I heard her correctly. She also said she would fax the report. So, tonight, I saw the report and read the words and did a little dance and sang a little song. I called my family, and coincidently my sister phoned me right after the doctor. Everyone is thrilled. Then, I received emails from my UCLA doctor fan club and they all were equally as happy even writing “wonderful!”, “great report!”, so I knew I wasn’t dreaming. I did cry, but it was tears of happiness and relief and just knowing that all this medicine is working. Of course, this means that I will continue my treatment for about 11 more months, but who is counting. Unless, the UCLA team can come up with something else, I am okay to go there once every 3 weeks even though the closet really still needs a makeover. Maybe, this is my real purpose, to get the closet a makeover so that other people can be in a healing environment instead of a closet! So, I am off to sleep the best sleep ever!

That wasn’t a Mai Tai for sure!

November 5, 2010

Ooh, yech! That lovely beverage for the scan is so disgusting. I did manage to drink it better with a straw. Besides the “you will feel like you are urinating sensation”, there was the burning your body inside feel like you cannot breathe, but it will only last “for a minute”….It was much longer than my last scan, and I only told them a million times about the time they thought I had lung cancer since the radiologist misread the scan. Hopefully, they will see what is supposed to be there and not what I have already had removed with my surgery! At least that is done and I don’t have to do that again for 6 more months. Now is the wait and see, but since there is nothing I can do about it, I might as well enjoy a good book and go to sleep. I have done all I can do for today and just have to stop glowing and keep drinking to get rid of this junk! Too bad it can’t be a mai tai!

Back to Reality!

November 4, 2010

We had such a great vacation! We did everything we wanted to do and ate everything we wanted to eat and drink too! Upon our arrival, we were taken to our first room (notice the word first) where a giant inflatable whale was sitting on the bed and a plate of peanut free cookies (wow!). We opened the drapes and sliding door to hear giant rumbling of some machine and a view of the trash (back of the house). I started crying (I was still medicated) and would not require much to make me cry. A call to the front office moved us to our second room very lovely overlooking the koi pond. After getting things unpacked with Jim’s help, I started having a giant heat flash, but Jim was sweating too. Hmmm, we both realized that the air condition was not working. Okay, no tears yet, but a call to Engineering and some work on the a/c. We were wiped out and had an early dinner and off to bed as I was still over the top medicated and very foggy. UNTIL, the strange whistling noise happened all through the night. At first, I thought it was Alex making some strange noises in his sleep or my medication causing me to dream about strange noises like some Samoan dancers doing some type of Tiki Room chant from Disneyland? Of course, this wasn’t the case and the next morning, I did not cry, but wanted the noise to be gone. It was the noise of the air condition gone crazy. Alex and I went for a walk on the beach when I realized that I forgot my bathing suit. Typical! Something I did not want to do was go shopping for a bathing suit! Jim took matters into his own hands and asked for our third room offering to pay the difference for a noise free, garbage free view, and to have a nice view room. So, we went to our third room which was overlooking the pool and had an ocean view, plus was a larger room and did not have to pay anything. After this, the room move stopped and we enjoyed every day in our new improved room.

We went to this beach called Punalau which we are usually the only people except for some locals. We love this beach as someone created this mini aquarium as Alex calls it for him to snorkel without being hit by any waves. We also love building forts from rocks, shells, coconuts, and anything else we find. Unfortunately, we were hit by a giant rain cloud and it was raining sheets of rain during our first visit to Punalau. After the rain was hitting us horizontally, we decided we should pack it up. You have to walk up hill to the car, so we were met with a bit of a mud slide. I was laughing so hard as we were getting soaked in mud, rain, and sand blown by the wind.  We could not stop laughing when we realized that we forgot the change of clothes, so we just took off the mud shoes and drove to the next beach to shower off. Of course, Alex decided to be a big help by putting the mud sandal in front of the shower to get a giant mud shower all over himself.  Our next trips to Punalau were not as rainy and not as exciting, but just calm and relaxing. We also had some great meals with delicious hand dipped chocolates for our anniversary with a white chocolate hand written note that was very delicious. I also had my share of mai tais and decided the Four Season’s Wailea has the strongest best mai tai which was not sweet, but kind of sour. Yum for me!  All in all, it was our best trip to Maui ever and we did not want to come home.

Now, back to reality and tomorrow is my PET scan. Drum roll please…so we can really see if all these drugs did what they are supposed to do. I am thinking that all is working  the way they wanted since my latest blood test looks good. I received the results today who knows why they forgot to give them to me when I was at UCLA last time. I am also the proud owner of some very tiny eyelashes and my eyebrows are back, but growing in very strange. My hair on my head is not to be commented, but lucky in Maui they had one of those giant magnifying mirrors, so I could see that I was not the owner of a receding hairline, but there was in fact little tine hairs growing in the spots that I thought were blank. The hair is still not pretty at all AND unfortunately, some hairs are now appearing on my underarms and legs. Guess I will have to start shaving again or I could go Euro.

I also started the negotiation for next week visit to UCLA since I was so over drugged which was a good thing since I had no side effects or very minimal except FOR BEING drugged! I requested to have a change of the pre-drug cocktail, but was told that they will reduce the amount, but I still need to have a pre-drug cocktail. Hopefully, I will have less issues as far as the fog and no random texting.

So, tomorrow I will be radioactive and glowing (okay, not really) and will convince myself that I am drinking a gallon of dairy queen chocolate malt instead of the pepto bismo drink that they give you before the scan. Yes, and when they tell me that you will have the sensation of urinating on yourself, I have just given into this fact and will not care, but am more worried about whether my wig has metal in it, so to wear or not to wear the hair is the real question. Off to dream about the carbs that I could not eat today!