Archive for December, 2010

“We should stop and revel in the time that we have right now, instead of wishing it away.” Vickie Girard

December 25, 2010

Yes, easier said than done when it comes to nausea. On a very very positive note, I was “upgraded” to the overflow suite next door. I know it was because the other closet had no seats, but I am thinking my wine gifts for pre-Christmas last time may have helped. This closet had space (no holding the hand of the next patient), windows all around instead of 3, and best of all MUSIC! It also seemed to have more oxygen and less smell most likely due to the lack of the crowd. The bathroom was even clean(er), not great but improved. The best Christmas gift ever was being informed that the closet is moving in February! I had one of my favorite nurses and the other nurses told me that they actually are giving input to the design, colors, and even wide screen with relaxing images. The only negative that they said was that even though there are more windows, the view is of the hospital. They also advised me that I should call the number on my survey to add more of my input. It only took 3 surveys to push this along with conversations among fellow closet visitors. Yipee!

As far as my treatment, again they almost gave me double the dosage and luckily they do show you before they start. My CA125 is the lowest it has ever been-12! Of course, my platelets are still low, but the nurses think my body can recover itself. The nurses and my doctors advised me when I have the fatigue that is more than normal, I need to rest my body. Hmmm, I know I will listen. My doctor mentioned that my next PET scan should be February or beginning of March because yes, I am reminded of the high probability of recurrence. There are always upcoming developments and research including a vaccine for people who have a recurrence, but I am looking at this information more for a proactive approach and less from their statistics since I know I am not a statistic.

Visiting this new closet was better, but still reminds me of all those who are facing this fight. One mother and daughter came in. The mother was a new patient having already started chemo at another facility. They both appeared nervous and the daughter had that look that my family had of grave concern, love, and not knowing what to say or what to do except that she looked pretty pale. Even the nurses asked her if she was alright. While my cousin, Margie stepped away, the daughter fainted. She was so upset as I know she did not want to upset her mother. So, I told her of my crazed induced drug story when I unplugged myself, talked to strangers, and sent scary texts to some of you, Alex’s babysitter, and his principal. She smiled and said now she did not feel so bad especially since the nurses had to add their perception of my craziness. Margie kept me smiling and time passed and we always seem to bring a lot of sunshine even in this more sunny closet.

Yesterday was yesterday, but I should have known based on Thursday night when I could not eat a bit of food that I was going to be nauseous. So, I lost a bit of yesterday and took some meds, so I could eat. I am sure all was fine since I only lost 1lb since my last closet visit and I ate all these yummy treats brought to me by my neighbors on Christmas eve.  Today, I am much better and looking forward to getting outside. I wish all of you the best Christmas and healthy 2011 for everyone. I appreciate all of your notes, emails, cards, hugs, support, and love. Besides all of you, my family both near and far have given me the strength to continue this challenge.

“Refuse to get depressed about the things you can’t do at this time; it doesn’t mean you won’t do them ever again.” Vickie Girard

December 22, 2010

Just finished the book, There’s No Place Like Hope by Vickie Girard. My cousin, Margie gave this book to me and it is one of my favorites besides Crazy Sexy Cancer Tips. There are so many great comments especially, “It is “only” hair when it is someone elses” or “a bad hair day takes on a whole new meaning.”  This book is great especially to remind me of what is important especially when I get in my “funk” and especially when it has to do with the fuzz growing on my head or lack of! Who knew hair would take so long to grow from baldness. I saw this new cold cap that is in trial phases where you put it on your head, so you don’t lose your hair during chemo. I will bet that the insurance will not cover that one.

So, it is raining here. Yes, raining for more than 3 days or is it 4 or 5, but this is something that people who have lived other places call winter except the rain could be ice or snow. Yes, the rain can be depressing, but look at all the things you can do besides playing in the rain: clean your closet, read a great book, cuddle with your husband or son, drink hot chocolate, and plan your next sunny vacation.  My favorite thing to do this week was to put some treats in my mailbox in a baggie for my postal carrier. When I saw him being pelted by the rain and wind, trying to put our mail in as fast as possible to prevent it from getting soaked, I had to do something. He wrote me a note and put in back into the baggie with my mail. What a nice surprise and I just wanted to bring one fun thing to his day.

My first weekend of vacation was spent getting my blood tested and getting antibiotics AND pre-natal vitamins?! Who knew that could be a cure for my fatigue. Yes, my platelet count is down, down below normal, but a bit off from transfusion. All I wanted to do was prevent a transfusion on Christmas day. I just had this thought that on Christmas there would be the leftover bad blood along with a doctor and nurse that did not want to be working. It just seemed like a bad scenario all around, so best to avoid that until after the New Year (if necessary). Instead, I will visit the closet on Thursday for one more treatment down, not counting the rest to go. I have just the outfit picked out as a friend referred to it as a true fashion statement. Of course, my mom’s very very brief visit helped with the fashion statement including a new pair of fantastic boots and some very comfy sparkling Toms. We had a great time and a great lunch or two especially with two great women (you know who you are!). I do think it is strange that my rash disappears only days before I get another treatment.  So, cheers to the steroids that I will be taking tomorrow. I don’t think they go with eggnog or wine, but possibly some champagne?

All of you should get out in the weather. It is ONLY rain except I do recommend avoiding the So Cal freeways. I spent some quality minutes behind several drivers doing 20 mph in a 50 mph zone and the rain had stopped. Go to Costco or Target and buy some cute rain boots, rain jacket, and go play in the rain or at least go play in the rain on the way to your car to do something fun!

 

So far so good….

December 4, 2010

So happy with my earlier appointment even though the place makes me nauseous! I had one of my favorite nurses. They all thought I looked fantastic. I know it isn’t saying much when you look at the closet guests, but I think it is a good sign. My platelet counts are low again, so I will do a magic dance and a song to avoid a transfusion. This is all part of the “normal” of what to expect. Finally, with the slow drip, I was able to carry on a conversation and not act like a crazy person…glad we figured that out last time. The waiting room was horrible with way too many people and one woman moaning and groaning for 30 minutes while I was waiting. Of course, I forgot my headphones, but decided to play Angry Birds for a distraction. It almost worked until her moaning was sounding like bird sounds to me. All in all it was nice to hang out and laugh with my cousin Margie. They just love us there! Plus, with an early appointment, we all had time to recover with the lack of light and oxygen and smelly smells to have a nice evening. Today, since I had lower dose of steroids, I felt so much better and hope it all stays this way. I don’t mind the fatigue, but the weirdness from the steroids is even too much weirdness for me. Everyone have a great weekend, get outside, check out the holiday lights and avoid the crowds of the stores-shop online unless you really enjoy the shopping!

Off to the closet…

December 2, 2010

I did not sleep well at all. It could have been the pre-meds or feeling the wind creeping through my beenie blowing the bald patches on my scalp! All in all, I am hoping for a smell free, easy visit with toilet paper and soap in the toilet! Since they are squeezing me in early, who can say what will happen! I will come in as cute of an outfit as possible, but forgot about the IV, so this eliminates so cute long sleeve tops. I am also bringing candy even though I forgot my next visit is on the 23rd. Maybe, I will bake something to bring. Looking forward to picking up some Diddy Riese cookies to get me through the next few days. I am hoping they have something holiday-ish, but who cares cookies are cookies!