Archive for August, 2010

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” Dr Seuss

August 28, 2010

So, I went to bed earlier than Alex last night! I made my first outing and things take time, right? My latest eyebrow crisis came when Jim was coming to hug me and almost wiped my eyebrows off my face! Luckily, I was not planning any additional outings for the day, but I will be happy when the hairs come back…who knew how much I could miss those tiny hairs. Speaking of tiny hairs, my head is showing no sign of recovery with small hairs and still some strange curling antenna. Alex expressed his concern and asked if it was going to stay like this, but I assured him that it will all come back fine or new or better than the bug antennas. When you have no hair, you look at other people’s hair more carefully. So watch out people, I am looking, so you better be using your flat irons, hair dryers, curling irons, and getting those high lights, low lights, favorite colorings as I am a bit jealous. I do stay cool at night and that seems to be a great benefit in this summer. I think I have just discovered after all these months that my wig has a clip that was put on backwards which creates the brain squeeze. Either that, or it is me just being uncoordinated. I will take it to the wig shop eventually, but I have better things to do this weekend like exit my house! It all feels like a blur with this closet schedule and I really cannot believe that I am approaching my sixth time to the closet with still no signs of great decor improvement! I have plenty of time before my next visit and I am planning on gaining back my weight in no time and getting back to the gym, so I can be as strong as I was before this hiccup! It is nice a cool now, so I am going to enjoy this weekend of coolness-yipee! I think I see the sun, but it is so nice and cool. Got to visit the ocean for sure!

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“For every minute you remain angry, you give up sixty seconds of peace of mind.” Ralph Waldo Emerson

August 25, 2010

I am out of the bed! Here is the reminder to live in the NOW! What one time was a shopping therapy after chemo became something at the opposite end of the spectrum. I had nausea since Thursday and stayed in bed since yesterday. Yesterday, I went downstairs for an adventure. Today, I will adventure outside! (even though it is 100 degrees here). Who knew that this would happen? My Doctors responded with calls throughout the days and nights saying that I responded so remarkable before, but now???? The only thing to do was drug me up and “sleep” it off. This is what I did, so while I usually remember my fog, I have no memory. I was angry about the situation, but tried to move to the fact that I only have one more time like this and now the Doctors will give me something at the chemo closet instead of after?! Jim and Alex kept cheering me on each day with such positive wonderful comments that of course, I cried! Alex said he understood that I felt bad, but knows I will be better.  My wonderful friends provided some great notes, cards, and emails AND help with Alex!! With weeks until school starts, I feel like I need to make even more of my days since I lost almost a week of time in a giant fog. So, I will go slowly and make the most of the day, but I definitely feel like a turtle moving around the house. Today, I can finally eat food, so waffles and pancakes sound great, but you know I will eat a high fiber cereal just because that is me! BUT, maybe dinner will be pancakes?!

“We must accept finite disappointment, but we must never lose infinite hope.” Martin Luther King, Jr.

August 21, 2010

The Food Network is out for now, so I am back to the Travel Channel (but avoiding all food related shows). At least, I have a better understanding of what to take when, but you know how I get about wanting to do more and only giving in when the symptoms are too much.  I waved my white flag and have been in bed a lot. I remind myself of only one more 8 hour session and when I am into the 3 hour phase and things will be better. Basically, one more month!  When I get on my pity pot, I think of those faces in the closet who seem to not find any fun moments or seconds. I try not to get frustrated and just take advantage of seeing all those fun travels around the world on the Travel Channel. My goal for today is to get out to the beach even if it is for a short walk or stroll. The ocean air always seems to help clear my head  along with the sound of Alex’s laughter splashing in the water. Get out today and find a few fun moments, they are always there and try not to stress the small stuff as it really doesn’t matter!

“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.” Helen Keller

August 20, 2010

On a positive note, I made it first in line to Diddy Riese and told the guys who work there that I had to get to the hospital as the nurses were counting on these cookies. He opened a few minutes early, so I could get my precious cookies. Upon my arrival, I noticed new lamps and more light in the waiting room, but if they could only change the chairs. When I gave the cookies to the front office, I was greeted with “you look amazing, your hair is beautiful, you look fantastic”. My Doctor even came out of the office to greet me and shake my hand saying I look great. Wow, my outfit must have been good and Jim said the eyebrows worked really well today! Nice way to start. Plus, the best was that as the door opened with my nurse, it was my favorite one!! Wow, this is all before my second delivery of cookies. She is the best of the best and gives me all details big and small. At my weigh in, I was just right. Of course, they have to comment that I could gain 5 more pounds, but hey I am sticking with just right until my taste buds come back!! When I looked at the closet, it was filled with the old, moan and groan crowd. UGH! Also, the women in PJs who had no hair, no makeup, no smiles, and some even had the patches of bald with some hair. Plus, the worst part was that the music was gone. I asked my nurse who informed me that this group was a non music group and had complained about the music. After taking all my blood tests, I was greeting with my cheerleaders, doctors and nurses telling me that my red count was almost normal AND my test that measures the cancer was even lower and normal. Yipee! I also had visitors from the rest of the nurses who told me that I look fantastic and they were glad to see that my face was not so gaunt. I think I did get the most stylish award, but it wasn’t saying much with this crowd. I continued to smile and laugh and got a few smiles back. Even the woman who was walking around with the bald and hair patches decided to put on a hat. With Jim at my side attending to all my requests big and small, time went by fast. We also got to catch up on everything, since I am usually asleep when he comes to bed and he is up before me on calls or gone to work. Also, my Doctor visited us almost every hour if not more. Of course, when Jim went to get my lunch, I had a visitor. He was at the nurses station and then made a straight line for me. He introduced himself by name, but did not give a title. He did have a badge, but I could not read it. He asked me first if I was a single mom (after he had asked me if I had kids), then asked if I had a partner, then asked if I was married. I was curious about the order of questions, but it could be some type of sensitivity training. Then, he proceeded to tell me that if I wasn’t plugged to a machine, he would have thought I was a visitor.  He went on to ask me about my emotional state of mind. Hmmmm, very suspicious? Did the nurses report me to see if I was “faking” it or who? Maybe, a fellow chemo closet member reported me? I asked him a bunch of questions, but somehow whatever I was asking brought him to laughter. Well, guess it is okay to make one person laugh in the room of silence. I answered all his questions and then, he started asking me many philosophical questions which I did not mind and found stimulating. Uh Huh, THEN, he told me he was a chaplain, but never told me which religion not that I cared. After he left, I asked my nurse and she said that he has access to all patients since he is on the staff, but she said that she was willing to rescue me if needed, but I looked fine. He said he would be back to see me….

Soon after, I had terrible nausea which never has happened before since they usually give me all these anti nausea meds in the pre meds, plus I took pills the day before. Who knows, but I thought it would pass. It did not, so I had to get more pills from my nurse. Soon after, my cousin arrived for some fun girl talk and Jim took off to his conference calls. Time passed more quickly even without the music. I was disappointed with no new chemo schwag, so shopping was slim. There were also not so many people, but I was told by my nurse instead of basically being on top of each other holding hands of the next patient in closet 1, that they put the other patients in the second closet which I am told is not better than this closet.

I am off to get my shot today which is usually the worst part and not digging the nausea, but will take more pills. The fog usually sets in tomorrow and I start acting more like Dory from Nemo. Although yesterday, I think the nausea was causing my brain to malfunction as Jim told me that I kept telling him the same things over and over. So, I will get out of the house for a bit and am reminded that school is around the corner for us So Cal group. Make the most of your day-my usual request (almost a demand) and live in the now!

Countdown begins!

August 19, 2010

These pre-meds are making me a bit crazy and my voice is very strange.  I am looking forward to one more long day at the chemo closet after this “session”. Once October begins, only 3 hours!!! I ran around like a crazy person today since I will be sitting ALL day tomorrow! It was ME day. I have movies ready for the ipad (Date Night and some others) and books loaded to the ipad and Kindle as a back up. I have snacks ready which I may or may not eat. Got my Diddy Riese plan since they open at 10am and my appointment is at 10am. Hmmm, cookies may have to be the priority OR Jim will go back to get them. I just have not picked out the ideal ensemble, cute outfit for the closet. I am planning on wearing my other hair even if it squeezes my brain. It may be worth having this pain instead of the later pain? I am available via my phone for email and promised Alex to email him during the day. Of course, the heat is here just for some added fun for me. Looking forward to seeing if the music will be playing at the closet and new chemo schwag AND more improvements. Stay tuned! Stay cool!

One of these things is not like the other….

August 16, 2010

I spoke too soon. Why is it that these side effects do not work symmetrically?  There isn’t any hair on my right arm, but some hair on left arm? Of course, now right eyebrow missing (no connect the dots here), but left looks pretty good for connecting. They should put the warning on the labels indicating you must be able to do those drawings when they draw one side and you have to draw the other the same way otherwise, you will definitely have some issues. Believe it or not, I still have the “druggy” track marks on my right arm which was from 2 chemo treatments ago. Is this going to be one of my scars of chemo? Oh great, now add that to the list of questions I get…”were you in a treatment facility over the summer or I have a “cousin” who had a similar “problem”.  I am afraid to rub my eyes or risk losing the rest of the eye lashes or eye brow. What to do? You know how it is when you tell yourself that something does not itch. What is up with the random curly Q hairs growing on my head like little bug antennas? As if I don’t look strange enough, I have to have stray hairs growing on my head and they are curly. Hey, who told me there was a chance for growing back straight? I am sure with these next treatments, these sprouts will go away. I am surprised every morning I wake up with a new situation and some are definitely not suitable for writing, but believe me I will share in person for full entertainment purposes.

We went to the Wild Animal Park and played tennis this weekend. By the way, Alex is so good that I could barely hit a return with his spins. I like to gear up with mucho activities since I am “down” for the count for a week. I also seem to be moving in slower motion or possibly my new workouts are just exhausting me more than I will give into…until my head hits the pillow. I have to get more muscle. Doesn’t muscle weigh more than fat? I feel like I am doing some wrestling weigh in…gotta get the weight on before it comes off! I still have a few more days and will be maximizing every hour! I won’t tell you again, but it is August, so you all better do the same-OR ELSE!

My ever changing hair or lack of….

August 12, 2010

I think I have the connect the dot eyebrow puzzle solved, but the hair is still a giant puzzle. My prediction is that after September I will have no dots to connect, but then I can stencil the eyebrow of the day. My only issue is itchy eyebrows or sweating. I could wipe away an eyebrow without thinking. It could be very frightening with smeared eyebrows. I took a look at the photos from post surgery (even in the hospital, don’t even remember that photo!), short hair, to my attempts at wigdom. I did think very briefly of creating a collage of the various hair styles, but then the whole montage to my wigdom reminded me of the reality of baldness, so maybe one day if I am in the mood. At this moment, I find it interesting, but not entertaining. Strangely enough I do think my kingdom of wigdom looks better than my hair post surgery or possibly pre-surgery.

My other thought these days is to the answer of the question about my cancers. Well, what to say, my blood test shows no real cancers now. The trifecta of cancers is almost like a chronic condition as the recurrence is high with 2 out 3 of my cancers. What is known is not a lot as cancer is different in everyone and I have seen how the chemo drugs react differently in every person. I know the chemo is working as seen by my blood tests. What the doctors predicted would happen based on what they know is not at all what happened with my treatment or my lizard baby. I am on a different path that no one knows. So, I think what I am trying to say is that I don’t have an answer. I only know what I know today. My sister bought be this great magnet with a quote by Eleanor Roosevelt, “Yesterday is history. Tomorrow is mystery. Today is a gift.” There are days when I am afraid and days when I feel invincible, but mostly I remember that today is a gift!

Back in the groove, almost!

August 11, 2010

So, I had some “technical difficulties” this past week. I was a bit out of “balance” or something. I almost thought the lizard baby was back, but I knew that could not be true since my weight did not change. It was very suspicious. So after some doctor visits, it was determined that I am full of air. I went for some acupuncture and blood work. Now, it seems that I am less airy?! As much as I am a big fan of food (Food Network is fun to watch), I am not loving food. Things smell right, but I keep insisting that things are not tasting right. This will all come back eventually, but I can see why you can gain weight by trying every bit of food just to taste something! I am still waiting for the results of my blood work, but I am confident that there is one more pill to take if something is not quite right.

Now, that my technical difficulties have resolved, I am now focused on going to the gym. Sweating with a wig is NOT fun and there has to be a better way. Seriously, I do not want to ruin my wig. Those who have seen me know what I am talking about…it is not worth that much sweating to ruin the wig hair do. Plus, what to do about all those people I now run into who love my new look and comment on how great I look with the straight hair. Hmmmm….I usually say that my son prefers this look since he thinks I look like a teenager now. Plus, the comments about me losing weight are also very special. What is my secret? I need to come up with something good. Chemo/Surgery diet is definitely a turn off. Maybe, I will use the decaf latte colon cleansing (coffee enema) as the secret or could there be another good one?

Tonight was my first date night with my husband since this saga began and we had a great time. I even ate dessert. We could not believe how long this saga has been going. It has been a blur and a stress that we cannot begin to describe or explain. It still seems unreal and unimaginable. We are both so happy that everything is going in the right direction. The most fun was talking about our trips for the future especially our Europe trip after this treatment process is over…one more year, BUT after September I will no longer have my full day at UCLA, but only 3 hours! I must remind myself of this since September is only around the corner. Sorry my friends, but I am ignoring the back to school, get up early, pack the lunch, and just looking only at no more shots, no more really bad side effects and no full day in the chemo closet.

Speaking of the chemo closet, I will be back next Thursday again. I have over a week to take advantage of all the fun especially with this strange August weather. Of course, because I have chemo next week I saw that the weather will be in the 90s again. I like the 70s and 60s weather! I plan to make the most of every day now that I am back in the groove! So, look for me at the gym or better yet, join me for a little bit of sweating.

Post chemo shopping therapy

August 1, 2010

Yesterday, I had the best day ever and not too much nausea. I almost could taste food! I had been dreaming about a necklace that I saw at the Sawdust Festival designed by Rachel. So, with Alex and Jim off to the circus, my parents and I thought we would go to the Sawdust with an attempt to eat lunch based on my symptoms. After 2 hours of talking to artists, walking around, and shopping (it was so great that the artists would change a bead or design while we were waiting to just exactly I wanted-what a treat and what talent these people have!), we decided that we needed to eat something. So, we went to 230 Forest Ave and I actually ate 1/2 of a salmon sandwich and almost could taste it! Still feeling good from my shopping high which offset my chemo low, we decided to go to my new favorite (just opened) store in Laguna Beach, Sadie Devaney (near Quicksilver on Forest Ave.). They have the cutest tops, jeans, jewelry, bags  and are so helpful and fun! They have pants that fit every body type and that is the owner’s dream and my dream too since I am so short! Also, what I love is that the price range is great. Yes, they do have some special items, but most are very reasonable. My Dad convinced us to go into the new Hurley shop which is called something else, but is located where the dinosaur egg/fossil place used to be. They have this funky image built out of books. The people who worked there explained that you could customize shirts, Converse sneakers, or other items upstairs, so we did! Now, I have my new custom purple designed by Mom and myself -very cool Converse!  I finally waved the flag at almost dinner time and went home to discover Alex my face painted clown to greet me.

Today is still not that bad with no appetite, but little nausea, so we are hoping to go to Dana Point this morning and enjoy the day. Thinking this new rock n roll chemo closet has set the tone for a new post chemo routine! Happy Day to all!