Archive for April, 2012

“Mom, I would give you my left hand, if you would feel better every day.” Alex

April 18, 2012

I did ask him why the  left hand and he told me that although he couldn’t play piano, he would still be able to write! I am pretty much out of the fog, but it wasn’t easy. I felt like I took a bottle of sleeping pills, but somehow they did not last long and was waking up with a lot of pain, but kept falling asleep. My boys looked concerned and told me that I did not look good, and somehow had the complexion of an oompa loompa (Charlie and the Chocolate Factory). I figured this was good since they didn’t tell me I looked like Violet the girl who inflates like a blueberry. I was just so uncomfortable and nothing seemed to help. It seemed like days passed and I couldn’t remember my name or names of things that were normal around the house items like a toaster, oven, fridge, or door. I think the worst part was the dizziness. I did follow the nurse’s advice (as Jim says, “finally”) and took sips of water throughout the day. I did attempt to measure the water by taking it from the same pitcher, but unfortunately, the pitcher was cracked and leaking water (so much for that plan). I rinsed my mouth about 30 times a day to prevent the mouth sores which also seemed to work.  I think I watched a lot of TV, but who knows!? I tried to be a good patient. I really followed all the rules in an attempt to do a couple of things: attend Alex’s carnival on Friday and enjoy my birthday next week without having chemo brain. Although chemo brain could come in handy for remembering that I am still only 21! This chemo is long lasting as I realized that the week before this chemo I should have been wearing a mask around town due to my almost zero immune system. Glad I didn’t know, so I enjoyed every minute until I had to go to chemo.

Alex is my second rock star! He sat in my bed and opened a very cool gift of photos of nature which had some pretty good quotes! He turned the page and read every one of them. He told me to really look at the photo and imagine that I was at the place hearing the water, seeing the wind blow the leaves, and feeling the warmth of the sun. When he closed the book, he said, “mom, there are a lot of good messages here. So, if you start having bad thoughts, you should open the book and read the quotes and look at the photos again.” Then, he kissed me on the cheek and tucked me into bed. My sweet Alex is such a big guy now!

I love the smell of the air these days. I cannot explain it. The sun is almost shining for me and the skies are almost clear. I do look forward to the carnival this year especially since Alex’s class has the baseball booth instead of cotton candy which does not work well when you are wearing a wig! Enjoy the springtime!



“Mom, you know what? I bet you wouldn’t be alive if you didn’t have such a great attitude!” my son Alex!

April 13, 2012

I am proud to say that I have made the most of every minute during my countdown to chemo. I have spent time with friends and enjoyed every second. I celebrated my speedy Passover and Passover with friends for more fun. I am sorry to say that I had to passover the Passover and bulk up with real food for my weigh in for chemo. Success! I gained 4 pounds! We went to Catalina with friends to celebrate and had a blast. This was followed by a swim day at another friends and then, down to Carlsbad flower fields, Torrey Pines (hike/walk), dinner at George’s in La Jolla (IN ONE DAY!). I felt almost normal, but who would do what we did in one day. I always said I am one to fill the day to the brim, but this was overflow. Alex even said he didn’t think he could walk one more step!

I was not too happy to go to UCLA until these lovely treats arrived which would make anyone smile. I was convinced treats in hand, my bracelet with my message to remind me what is important, also the necklace with an owl on front and smarty pants written on the back, were all the tools I needed. I never had such a greeting. They really missed me and the patients too. I even handed out treats to the maintenance workers and people who take the dirty linens.  I just needed some musicians trailing behind me.  So, while I did my weigh in with applause for my weight gain, I noticed the ideal chair open. The chair with double windows (facing the hospital, but you can see trees) was open. I almost ran to the chair. All the nurses just perked up and “ooh and aah” over the mini baskets with jelly beans.  I was also armed with all my charts and numbers for the doctor. I did get in a little trouble with ignoring my mouth sores. Now, I have a whole protocol for that issue.

The infusion happened with not too many issues and I went home to sleep it off. Today, I was all pumped up with steroids and acting like that dog in “Up”…couldn’t remember what I was doing the last second, so Jim kept saying, “squirrel”. I attempted to find out what my latest tumor marker was from yesterday. I finally decided on going to the top and in 3 minutes got an email back with a number that was over 100 points lower! I am thrilled to know this chemo is working. A downward trend looks good on my chart and even better in my mind. This was taken before I had this chemo, so who knows what the number will be next. Best of all, I will get to be an almost normal person by going once every 4 weeks. I will take the long lasting effects even better, now that I know it is working! Happy day and back to my chemoland!

“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” Michael J Fox

April 3, 2012

I am proud to announce that my VIP status still exists in some parts of UCLA! Yesterday, we arrived at UCLA early. I saw my doctor walk by and he yelled, “hi, Joanie”. The office staff told me I would have to wait about 30 minutes. I sat down with my ipad ready to camp out, but one minute later my name was called?! I thought there was a mistake. After being brought to the back, I noticed a line of 4 patients waiting for my doctor. I was a bit confused, but went to the ultrasound. I was greeted by the audience of 1st year, 3rd year, fellow, and party. I did not care as I know this is a teaching hospital. Lights out and the party started, but the main doctor started doing my ultrasound. This seemed strange and then, my doctor walked in and took over. They remarked some additional findings and my doctor asked how I was feeling. I told him that I don’t like that I feel like I have cancer. A 3rd year remarks that “patient was diagnosed in 4/2010 with stage IV, 3 primary cancers”. Of course, I know that, but he seemed to think I may be in denial or really have a bad case of chemo brain! My doctor responded that he completely understood what I said and told the 3rd year to go answer the phone and leave. Then, fellow commented about something which I could not hear and my doctor told her to leave too. He told me to go to his side of the office in another room. They were all confused and I found this strangely funny. The nurses were starting to get angry as I walked past the line of 5 patients waiting. I entered the room and he did more examining on his own. We talked about my charts and questions. He doesn’t leave until we talked about everything. Several times nurses entered and made comments about other patients, but he ignored them. He told me that I need to have the 2nd treatment and most patients respond by the 2nd treatment. He also explained what happens as my cancer grows and what symptoms I may encounter. He told me most people wouldn’t even notice the bloating I have and we joked that it looked like I ate 3 cans of beans. He told me that if I really cannot button my pants to call him. I expressed my concern about tumor growth and he said he will not let it happen. I told him that I am counting on him and he responded that he knows. So, it is what it is and I will know more after the next treatment. Until then, I plan on having a lot of fun before that day arrives! I am focused less on what will be and more on what is happening now. I am determined like my doctor advised me to enjoy what I enjoy and stay away from what annoys me. It is better advice than taking deep breaths. He even gave me freedom to eat what I want, so I will try that advice too! Enjoy the sunshine!!