Archive for May, 2010

Travel Channel All Day!

May 30, 2010

All I can say at this point is that anyone who has had to experience chemo should get an award or at least a free ipod! Yesterday, was not so special.  Alex was the best nurse I could ever have! He rubbed my back for at least an hour until he finally said, “my arm is broken now”.  Jim and Grandpa kept asking about different drink or food items. Grandpa put a cold washcloth on my face and neck. I just wanted “it” to be over.  Grandpa went to Ralphs to purchase a variety of ginger ale drinks which seemed to help. I just kept watching the travel channel all day and all night to escape to the best beaches of Hawaii and then to the best beaches of So Cal. Oh great, that just made me angry because I was wishing I could go to the number 6 pick which was Laguna Beach.  I went on cruises to Europe and Mexico, but every time they showed the buffet or any food items, call 911. YECH! There should be some type of travel channel without food and why is it that every commercial is one of those KFC disgusting close up pieces of whatever meat over and over.  I tried to escape, but just when I thought it was safe, some Carl’s Jr commercial would flash. I would squeeze my eyes tight and cover my ears and try to visualize my best beach of Hawaii.  After my last sip of  ginger ale and one more pill of something, I finally fell asleep.

The first thought in my mind this morning was french toast. So, I had some french toast with some medication (of course) and opened the windows. Today seems like a better day. It is a bright sunny day. I am hoping to watch less of the travel channel and experience more of the best of So Cal today. Hope you are all enjoying the sunshine!

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“It’s a beautiful day. Don’t let it get away.” U2

May 27, 2010

Yesterday, started as a beautiful day and today is beautiful again. It was the not so special in between time trapped in my pharmaceutical fog and confusion of too many bottles, too many times, and not enough organizational skills to put it all together. I was feeling great yesterday and did yoga for almost an hour and did little things around the house that I haven’t done in a long time. I knew based on all the reading, doctors info, and handouts on all the drugs, that when you feel good, you feel good, so take advantage of those moments. This works out perfectly for me since I am always about making the most of every minute. The unfortunate part came with all these scheduling of the drugs. I think I may need a flip chart or white board for all this info. Luckily, I had the 3 boys here: Jim, Dad, and Alex. So, Alex was handling the color coding sharpie of the bottles. Jim was organizing the time table and Dad was helping with his immense experience with the entire pill flow chart. It was quite an ordeal, but I think we all have it under control.

The best part about my beautiful days is that I am now back to my first trimester. I did not even need a pillow to sleep which makes me wonder about the potential of the alien lizard growth. Since lizards have tails and smaller limbs, then maybe it is a reverse type growth. Either way, I was happy to be comfortable, but the only situation came when what the doctors call the “stepping on the hose” belly which means bathroom visits of all kinds are not pleasant at a 6 month “pregnancy” bloat, but when it is 3, you have to jog to the toilet if you think of water. I think I almost freaked my Dad out when I intercepted his walk to the bathroom and nearly knocked him over.

I also got my lovely $4K shot which the Walgreens yelled at me to take immediately and/or put in the fridge. I asked her if  she wanted me to sell it on the black market or on ebay because she kept yelling, “it is a $4K shot”. I assured her that I was getting the shot from my doctor in 2 minutes. The shot was fine, but read the information about that and I should feel that in 4 days. I am hoping with all these schedules that I am feeling okay for the weekend and feeling good for Alex’s Open House, poetry recital next week. I know myself and if I want to be there, I will be there!

So, overall today is a bit lazier than yesterday, but still beautiful. Tomorrow with my home pharmaceutical team organizing my every pill taking, it should be even more beautiful.

And in the lyrics of U2, Beautiful Day:

What you don’t have you don’t need it now
What you don’t know you can feel it somehow
What you don’t have you don’t need it now
Don’t need it now
Was a beautiful day

Hope you all enjoy the beautiful sunny So Cal day!

Last of the Mohicans

May 26, 2010

I like this phrase that my fellow chemo partner announced as he left me alone around 5:45pm. He said, “guess you are the Last of the Mohicans”. He explained that is usually his role, but was honored that I take his position. His wife was equally thrilled since they have a busy 2 yr old at home. So, drum roll please….the chemo closet was not so bad AND do you want to hear the best news ever? In honor of my VIP status and new membership to the chemo club, the office will be having an upgrade and moving down the hall to a bigger chemo not so closet, closet!! Just so you understand, there is barely enough room for anyone to sit near you who isn’t having chemo. There are reclining chairs lined up side by side with IV poles in between. Luckily with my VIP status, I had the best chair with the best view (out one window) and best feng shui (if feng shui could exist in a chemo closet). I especially enjoyed not having the view of the down and out faces and chose to sit next to a young man who smiled and seemed to be the most positive of the crowd.

Everything takes a lot of time there and the nurses run from patient to patient because it is a magical chemical timing trick. The machines beep after 20 minutes of different infusions for each patient. These nurses do not go to the bathroom, barely take a sip of water, and constantly are checking on the row of recliners with some people requesting many things and some sleeping or snoring or whining. Bad news is the wi fi does not work in the closet! Why? Because it is a “closet” or closed in room…but my Doctor promised I can get a connection for next time. He better! BUT, I did listen to some good music while reading some very funny books on my Kindle. I have now convinced the nurses and doctors to get a Kindle. I guess Kindle has all sorts of medical journals that they would love not to carry around pounds of paper.

Jim had to sit in the lobby area since there were no chairs and he had to use his phone (no phones allowed in the closet) and had several conference calls. My cousin showed up right after they set me up and stayed the entire time. She goes to this office too, so they all know her and love her which made it easy for me. They also provide drinks (non alcoholic!) and snacks. We managed to laugh a lot telling our fun stories of family and the ongoing pregnancy joke which the nurses who watch V decided that I could have had an affair with a lizard and have a lizard baby?!

All in all they were surprised that the drugs which made me feel comfortable did not make me sleepy or agitated like others feel…yes, leave it to me to have a different reaction. So, we will see what tomorrow will bring. I am supposed to get a shot the day after chemo, but I thought it would be ridiculous to drive up 1 1/2 hours for 1 shot, so Jim and the Doctors, office staff worked all day to get it arranged to my internist who will do the shot for me. My Doctor held my hand about 10 times during my visit. He is so kind and caring…just amazing.

I am unsure what to expect, but continue to think positive. Strangely enough, I had a great time and enjoyed entertaining the group with all efforts to bring the most smiles. As my cousin says, I will talk out loud even if no one seems to be responding verbally. I will switch to Thursdays which will be the audience that I was not very fond of, but hey it is worth the effort even if I only get 2 smiles in return!

By the way, the nurses loved my outfit with my new necklace and new purse! I think I have to return one of the shirts since I look 98 in it! The rest of the choices are good. More news on the closet later…….

Lesson 1: Never ask a person if she is pregnant unless you are 100% sure!

May 25, 2010

As we raced to UCLA, since I was composing my latest and greatest medication list, we were short on time. I also changed outfits since the one looked like I was an old lady and the other looked like I was appearing “too pregnant”. When I left the hospital after surgery, I appeared to be “9 months pregnant” with the inability to touch my toes. During the weeks following, this changed and looked like I had gained a bit of weight, to the look of some major gas, and finally to the look of pregnancy once again. It seemed that I am only “6 months” and this is caused by the cancer, surgery, fluids and all things that you would want out of your body if you are having trouble touching your toes. We arrived to UCLA and I had to take a series of blood tests. At the UCLA lab, you are given a number and it makes it feel like you win something every time when they call your number. Who knows why? Probably when you walk in, the number is 10 and they give you number 87. I always jump up right before my number is called and asked what I win, some look at me like I am crazy, but I usually get a few followers yelling, “I won too!”. Now, here comes the comment while taking the 5 vials of blood, “how many months are you?”. If she actually read the lab work paper, it indicated that the “bloat” was not a baby. Of course, I had to tell her, it is not a baby, it is cancer. She felt horrible, but then went on to say her sister has cancer and she dropped out of nursing so she could help her. After my 4 minute blood test turned to a 15 minute conversation, all was not too badly damaged from the no baby comment. Of course, this began the ongoing  joke in my Dr E’s office who had several nurses wish me luck with the “baby”.  Dr E’s spent 3 seconds telling me that we were going to drain my belly. WHAT? To Drain or not to drain was the question. Procedure=possible hospital stay =possible infection and the fluid will come back and be there on/off during chemo, so “NO” was the answer to that question and Dr E. was off. So, we went to the next appointment which was the hematologist. We met with both Dr G and Dr K and we love them both, but in a different way. They have this willingness to care beyond what a doctor should do as far as caring and extending themselves. Dr K has called us on the weekend and sends us immediate emails. He holds my hand with both of his and looks into my eyes and tells me that it will be alright. Dr G is funny and also has this penetrating look into my eyes as if looking for a secret answer that I am not giving him. They said they would have lost the bet on me since I am such a unique situation. I am confident that I am going to be upgraded even more to a new status for my uniqueness. I am sure books, papers, and pharmaceutical companies will be calling me?!  We start the chemo this morning and it will take 5 hours each time. They have many drugs to counteract the side effects.

I am now an official branch of Walgreens. I have it all. My counter is so full that I need color coding for all the narcotics. I am thinking of opening up a shop later or maybe a what not to take when walking down the stairs. Seriously, it is a store!

I am ready to go and even if I am in a small room (chemo closet) they promised me to fix the wi fi since I was having some major trouble. Both Dr G and Dr K said that they would hook me up since I will be there 5 hours. Luckily, I will have my cousin coming over since she goes to Dr G and has been through this many times. I am bringing all devices for entertainment: iPad, mp3 player, droid, and Kindle loaded with some funny books. I am turning into a sales rep for these devices when in the waiting room, I am doing “show and tell” to the patients. I am trying to convince them of my new idea to get some of these companies to donate this type of equipment to the chemo closets of the world! So far, they think it is good idea, but would require a lot of work. These people don’t know me and I will be getting some donations eventually!

So, say some prayers, wish me luck, send your positive thoughts, and I am thinking of changing the chemo closet to the P4, pleasant, positive, powerful, place……hugs to you all!

Travelling, soon?

May 23, 2010

My shopping adventure with Dad was fun, but required a big nap this afternoon. Part of it was seeing myself in the full length mirror and not recognizing my body. I took a long look and wondered what body was attached to my head and took a lot of deep breaths before showing my Dad some of the clothes that we picked out. I just focused on my face and realized that it doesn’t matter. I need to focus on my healing and this body is in transition. Plus, we had found some really cute clothes that are even comfortable. When I paid for the clothes, the cashier asked if I am travelling. I decided that I will be travelling in the months to come. I will be travelling to Maui, Alaska, and even Italy and she did not need to know that I was not actually getting on a plane, but just dreaming my dreams.

Upgrade to larger room?

May 21, 2010

So, I am trying to get all my appointments organized on Monday. This is the fun that I have on the phone all day and to think that I used to have conversations about kids, school, food, sales, and fun stuff. Oh, don’t get me wrong, this is fun in a strange way. I always try to ask a lot of questions to get the real scoop. So, when I talked to one of the nurses about the “chemo closet”, she knew exactly what I was talking about…I told her that the audience was very crabby there and askef if there is a VIP room or larger room. She gave me the real scoop indicating that there was another room which is much larger, but could not guarantee the “audience”. I told her since I am a newbie, could I have the crowd reviewed prior to making the appointment. She thought this was hilarious and said this was the first request she ever heard. I think that since I seem to be a VIP in all other areas of my treatment, I deserve the upgrade with the hand pick of the best people, right? I mean I have a new cute haircut and will have a new outfit that does not belong in “the closet”. So, stay tuned to see if I get an upgrade or find a coupon that entitles me to one free visit to the VIP room before end of May.

Yoga, stretching, and shopping

May 21, 2010

Today, I met with my new physical therapist who was cute and did not have a fixation on paper towels, toilet paper, hand washing, or excessive sweating. She helped me immensely with stretches and yoga poses that I only have dreamed of doing, but actually could do a lot more than I thought with some modifications. She was so encouraging and told me that my attitude will heal me more than anything else and I am much stronger than I think. She really did make me realize that as I managed to stretch my legs and even my arms more than I had done in weeks. IT FELT GREAT!

What also helped my healing was seeing the smiles from the Canyon Vista staff, teachers, and students. The team at the book fair did such a fabulous job-not only did the fair look fantastic, but they already reached and exceeded the $10K goal! I went during 3rd grade 1st recess to meet Alex. Those 3rd grade girls know how to make a girl feel good with their very cute comments about my hair. They said that they like the “new me” and my “new look”. They even told me that I look “more fun”?!? I am sure happy about that, but what really warmed my heart was hearing our students play their instruments. I say it every year to the music teachers who make musicians out of our students. What once sounded like cats crying or strange animal sounds, now sounds like beautiful music! How do they do it? I loved spending a bit of time with Alex at the book fair, but it wasn’t enough and never seems like enough time.  For just a moment, I forgot what was happening to me until someone I barely know looked at me with those eyes and “the look” instead of the smiles and hugs, there always has to be one in the crowd, right? I am strong and stronger than you know.  You all know I fight for what I think is right on a daily basis, so you know that I WILL fight!

I am looking forward to more stretching and yoga, but going shopping this weekend with my Dad. My Dad always has excellent taste for everything and is also very honest when it comes to clothes and how they fit. I have to upgrade my wardrobe for next week. If I have to appear at the “chemo closet” at UCLA, I will need a good routine and some good clothing. Something that is comfortable, but that makes a statement. I know my Dad is the perfect person to find me my chemo clothes. That crowd is tough and I will not be happy until I get them all laughing or at least smiling!

Weather has been great! You all better get outside and enjoy the sunshine…OR ELSE!

My Husband the Rock Star!

May 20, 2010

Some of you have not met Jim and others who know Alex can get a “picture” of how Jim is…not only has Jim been working at his job, but he has my job to do as well. I am not talking about the fact that Jim loves doing the laundry, making the bed, cleaning the kitchen and is KING of all things network in our house, he does all this normally and every day! Are you all jealous yet? He even mopped the floor this week after I complained about 5 times about my dirty feet and the dirty feet will dirty the carpet and then the major calamity will occur. (you know how I am!?) The job that I am trying to explain is my new medical organization fact finding job, medical treatment, and anything that I do not hear when we go to these doctor visits. He has taken all these job duties and has taken them seriously. He has found the latest and greatest treatment for me and even talked to doctors in the UK. He has sent emails to his co-workers and everyone he knows and does not know. He is a Rock Star and does not accept, “no” and is learning so much that one of his emails looked like he was a DOCTOR. The language was nothing I understood, but the doctors responded.  What amazes me the most is his emails when he explains with specific powerful words that I am his world and we will beat this no matter what. He is my Rock and continues to amaze me every day! I cannot believe that each day he starts again with the same momentum as the previous day and is never willing to take a break. We always laugh about Alex and his analysis paralysis, but this trait inherited from Jim has proven to be an asset to our fight. No stone left unturned, no treatment hiding from us in a different country and Jim has such strength and determination. Even though I have my moments, I cannot help but to be motivated every day!

Vet Appointment at UCLA?

May 19, 2010

I am the only person to have an entertaining trip to not one, but 2 doctors at UCLA today. The first was very special! I was waiting so long that I became an expert at ipad bowling? I also learned how to fish with my ipad! While being caught up with my music “dancing” in my seat, “planting and harvesting” Alex’s medieval castle game on my ipad, Jim kept telling me that he was allergic to something. I could not hear him, but noticed that his eyes were almost closed and not because he was falling asleep, but they were so puffy that he could barely open them. He asked me if I had some benadryl. I finally looked across in the waiting room and notice a lovely dog sitting and rolling over on the chair off the leash of a patient waiting for her appointment. The dog started to bark and jump and shake his lovely long hair around the waiting area. Of course, at this time Jim needed his inhaler while another patient told the office manager and the woman sitting next to me told me that the dog bites too! This dog was a pet and not a seeing eye dog. Not the best place to be in a room full of people who are recovering from surgery?! I took matters into my own hands and requested a pet free room asap. I also told them that the last ailment that I needed right now was rabies, ticks, or fleas. Jim responded that we could get a flea collar for me.  While our wait continued in our pet free room, we started making up flavors for all my ailments. It was getting a bit disgusting, but well worth the laugh. I did ask the nurse if the dog was here for a pap smear.

Back to my ipad and mp3 entertainment…all I can say is these companies need to donate this electronic type of entertainment to all patients! I was the only one with a smile on my face and tapping my feet to the music, while the rest of the room looked like they were nauseous…although they could have been?! Well, you know me, I will figure out how to improve this process after I finish a couple of months. I am all about better ways and improve this process for people to feel good!

By the way, the doctor said he loved my new haircut and he had to add that I am both beautiful inside and out!  So, next week I am back to UCLA to get some cocktail of some type to make me better than ever! I am hoping this may include some shots of rum, tequila, or even Pimm’s?

p.s. I heard that the Book Fair is beating all numbers from prior years! Way to go Book Fair Team!! I am so proud of all of you! Thanks for working so hard!

“You’re only has good as your last haircut.” Fran Lebowitz

May 18, 2010

“I feel good, I knew that I would, now”…how about a little James Brown in honor of my new fun haircut. The sweetest hairdresser in the whole world cut my new sassy hair in celebration of this week of saying good bye to the Turtle and hello to the almost full time Cheetah. Okay, not quite, but I am getting there. I almost felt normal just for an hour and this hairdresser has the P to the 4th power and she brought me to a pleasant positive powerful place.  I am going to look so cute at the appointments at UCLA tomorrow. I may even wear some real clothes versus the loungewear, but that may be pushing it.

Have to do one more song for tonight and give a “You know you make me want to SHOUT” (Isley Brothers) to all the book fair volunteers for making the book fair the best one ever! Thanks for all your hard work! Our students will benefit from all the new books in the fall in our library! “SAY you will, hey, hey, hey”….Hey guys, I went to college in Virginia and these songs were popular down South…I am NOT that old?!! But, hey my hair looks cute!