Twisting...balloons !

Went to the Holiday Open House at Wright State University for A Special Wish Foundation, Dayton, Ohio. Vanngo went with me, her sister, Linda drove her there. Our clown alley, Giggles and Grins, provides clowns for the annual event. Alto did a Magic Show and I saw Mickey, Sparklelee, and Lullabelle doing face-painting. Zilcho was twisting balloons. Plucky, Tindy Ducks and a few more clowns were wandering about. It was an awesome time. A Special Wish is a great organization and does a lot of events and grants many special wishes through the year. You can learn more about it here:  A Special Wish .

Vanngo did a very good job of handing Yo-You balloons to the children and blowing a loud horn and announcing the arrival of a "Princess" whenever I made a Princess Wand balloon for one of the girls. I also made hats and alien swords and dogs.

                                                       Vanngo and Careful

                                                     Alvin and the Chipmunks

                                                                    3 Clowns

I have been doing pretty good, feeling more normal. I am still tired a lot and get fatigued, but I am learning to pace myself. One thing though, I have been practicing driving a car again--after a year of no driving, and have noticed that when I do a lot of physical activity (I have been attempting to exercise more), even though I pace myself so as not to be fatigued to the point of collapse, I end-up with sore muscles that take several days to go away. It used to be that I could chalk that up to the age process. It seems more likely to be a combo of aging and chemo.

I made myself some liver and onions yesterday. I prepared the meal the way my mother used to make it. Caramelize the onions with butter and sugar and then lightly flour the liver and fry it in some butter. It came out really tasty. I hope the iron and nutrients that the liver and onions provide will help repair my sore joints and muscles. Although, the mechanism of the Alimta is to starve the cells that ask for nutrients.

I have noticed that I have lost several inches from my waistline. I haven't weighed myself lately, but my last visit to the Oncologist showed that I weighed 161 which has held steady since February. I weighed 180+ going into this whole ordeal, had a robust belly which I could do without. So, getting down to 160 or so is not a bad thing. I graduated High School weighing 158 ! Of course, I fear I may be losing some muscle mass. I will have to ask the Doctor how my body is supposed to repair and replenish itself when the order of the Chemo is to deny it !

So, everything is going smoothly. My next event is in December. Our alley provides clowns for a Rotary Christmas Banquet for Special Needs children in Springfield. It is also a fine time and a lot of fun!

Life is good...Life is an Adventure !!!

Roller Coaster

 

A clown friend wrote to tell me that when a family member had cancer that it was a roller coaster at times over the several years of the fight. I was doing pretty good since the diagnosis. The pain and the medication are something that takes a bit of getting used to, however. I injured my back several years ago and had two operations and a lot of pain. I complained to my doctor at one time that the medication was so strong that I didn't feel like doing anything except sleep. He said "I want you flat on your back for awhile." And, then when I was able to try to go back to work or school or just resume normal activities, they loaded me up with a lot of medication. I had muscle spasms so they gave me a muscle relaxer. That unmasked the bone pain so they gave me some stronger pain medication. In turn, nerve pain was unmasked and they prescribed further medication. I would go to the pharmacy and they would give me 3 medications and a bottle of Malox for indigestion. "That medication will irritate your stomach," confided the pharmacist. Well, as soon as I was able, I weaned myself from all of the medication and then relied on aspirin or tylenol every now and again for severe pain. I also started seeing a chiropractor which helped immensely. The chiro would ask me what pain level I was in--from 1 to 10---with 10 being the most pain. I was usually a 9 going in. After treatment,I would be a 3 or 4 for a week or so. It finally got to a point that I was actually tolerating a pain level of about 6, so when he asked me what the level was, if it was severe, I felt like saying 3 or 4 (added to the 6 I was tolerating). That only served to confuse him though. 

I have not been taking medication for years except for an occasional tylenol. Now that they have prescribed me something stronger I balked at first. I would take it every 6 hours and a lot of times I would try to go 10 or 12 hours between doses. The pain began to get worse. I was told by the doctor and several experienced friends that you need to stay on top of the medication and pain. I went back to a regular schedule but noticed that I would wake up several times during the night with a lot of pain. So, I would take one a couple of hours before bed and then another when I went to bed and that would assure me 5-6 hours of sleep. The pain has been getting worse though because the neck mass has gotten a lot harder and it gives me a stiff neck and soreness and my shoulder and arm hurt a lot sooner. I was taking a dose about every 3-4 hours and napping in between or going for walks. I wasn't having much of a life...this was just in the last week. So yesterday I took a dose and then after 4 hours I took a tylenol. Then in 4 more hours another tylenol and then a dose of the regular medication. It helped but I had significant pain. I will continue to augment the regular medication with just tylenol and walks and see what happens and then talk to my oncologist next week. I don't like pain, but I would rather tolerate the pain if I can still function and get some things done .

I guess this is part of the roller coaster. I am going in for a biopsy in a couple of hours, It is done under general anesthetic because they want a significant tissue sample to see what chemotherapy they can use. The last biopsy I had was just a local needle biopsy and really flared-up the pain and swelling. I hope this one doesn't do the same.

Tonite is a clown alley meeting and I really want to go, but I'll have to see how I am feeling. We have a really great Clown Alley and this is the first meeting of 2012 with new officers ! Here is the famous website for the alley:

http://gigglesandgrinsclownalley.com/default.aspx