July 28, 2011
Today I am feeling a little better. The Triage nurse, Robert, called me and suggested that I also rinse my mouth with salt water. I like that idea and wonder why I didn’t think of it myself! That just tells you how unclearly I am thinking, because it is probably one of the first things that I would suggest to someone!
Any way, I have been using baking soda rinse, and a medical concoction called magic mouth. It sort of helps to heal and numb the mouth sore pain. Now I use salt water rinse first.
I could hardly eat yesterday, so I called my sweet neighbor who has brought over ‘green drinks’ for me occasionally during the course of this cancer. I took over some fruit and vegetables and she juiced and pureed them for me. I at least had some nutrition for my battling body. Then I called a friend of mine who sells high dollar juicer/blenders. They brought a sample machine right over that I could try out…. So thank you to my ‘blending angels’ for making it possible for me to have some high quality nutrition and to be able to prepare it myself.
One of the other problems is that my immune system has also been attacked by the poisonous chemo drugs and so I am unable to fight off infections and help my body heal as it would normally be able to do. The practical result of these problems is that it takes longer to heal, so I guess these sores will be around for a while … I wonder how much weight I’ll lose?
July 27, 2011
Sometime last week, my desktop went on the fritz. Since I had just had chemo, I was not thinking clearly, so I just left the computer turned off. I have not turned it back on yet. I have been using my little netbook (which just returned from the shop) to get by this last week. I am not that familiar with using the touchpad on my netbook, so I find using it frustrating. Add that on top of the lovely side effects and you can maybe begin to imagine my state of mind.
When I turned off my desktop the last time it had a BLUE SCREEN. Yes, possibly the BLUE SCREEN OF DEATH! Like I said, I have not wanted to deal with it this last week and a half because of Chemo. But that cannot go on forever, so I am hoping that I will feel well enough to take care of it later today.
July 26, 2011
I just want to thank eveyone for their words of encouragement. It seems that I am in need of them now more than I have been in the more recent past. So thank you for all of your thoughts and kind words and prayers. They have been very much appreciated.
July 25, 2011
Well, Portland Firefly had chemo 11 days ago. This was my third infusion (fancy word for chemo) of a drug called DOXIL. I now have a love/hate relationship with Doxil.
I love it because I am having a very good response to it and the side effects are minimal.
I hate it because the side effects are putting me at the end of my rope. The Doxil side effects are very different from the previous side effects that I experienced while on Carboplatinum/Taxol.
Yes, there is the constipation and the slight nausea. I have figured out how to keep those under control. The new thing is that I must stay out of the heat and the sun; the same thing for any thing that I ingest. I thought I had that figured out, but evidently not. Yesterday the inside of my mouth broke out in mouth sores… my mouth is sore that it hurts to eat! I just had 2 popsicles for lunch!
Also the tops of both of my legs from the groin to the knee have broken out in tiny little bumps which cover my entire upper legs. Uncomfortable? Yes. Impossible? No. Irritating? Yes.
Add to that the problem with my second toe. This problem started even before I finished receiving the drug in the treatment room. My toe nail started to lift up. It lifted up more before I was able to get home. By day three, the poor little toe was swollen to twice its size with a big “Doxil Blister” that ran its entire length. There was another one between the toes. That one popped by itself the third day, but the other one just kept on growing.
Finally yesterday, it started to ooze out some of the fluid, which started to relieve some of the pressure that I have had for the last 11 days. But it wasn’t until this morning that most of it drained out. I thought that all that had to happen now was to keep it covered and dry and clean.
But no! Now it is filling up again. Add to that the uncomfortable leg rash blisters, and my swollen and sore mouth and Firefly is pretty much ready to give up. And so… I hate these side effects… I’m going to see if I can eat a big juicy peach and watch some inane thing on TV or maybe read a book. Or take a nap… or …..
July 22, 2011
The meaning of your life is to help others find the meaning in theirs.
- Victor Frankl
July 19, 2011
Did you Know?
The Hollywood sign was first erected in 1923. Conceived as a real estate ad, it originally read Hollywoodland. The sign stands 50 feet tall, stretches 450 feet across, weighs 450,000 pounds.
July 16, 2011
So… I had chemo yesterday. I had to go to another facility on the other side of town for my infusion because there is a nation-wide shortage of my drug, Doxil, and only one clinic had the drug.
Last night I thought that one of my toenails looked like it was lifting up. This morning that suspicion was confirmed. Yes, in just a few hours this life-saving poison has caused one (I hope only one) of my toenails to completely lift up and it is now about halfway off. It seems that there is nothing that I can do about it at this point. I just need to keep it clean so it doesn’t get infected….
And since it is summer, the food lady from church is on a month-long vacation – I wondered why I hadn’t heard back from her – so I’m on my own for food. I’m Ok, don’t worry; Firefly has food. Fortunately on Thursday I stocked up on easy to prepare food from Trader Joes along with tons of yogurt from Safeway. Then Thursday night I cooked up some entrees for later on and put them in the freezer.
Now for the great news that goes along with my Chemotherapy…. My CA-125 results.
To recap — CA-125 normal is 35 or below.
May 2011 1618
June 2011 757 – dropped in half
July 2011 47!!!!! So this drug is working also….
There are a few reports – not many - of women having a complete remission after this drug and I am praying that I will be one of them. I am willing to endure the side effects if it means that I can live basically symptom-free for several years… Oh how I would love that!!!! What a dream that would be.
PS: Shortly after this post published, the food lady called me. She is bringing over Mac-n-cheese for me tonight… so I guess she is back from vacation and I’m getting food!!! I’m glad, because I am having an energy drain. Time for a nap….
July 15, 2011
Sand in the City, sponsored by Koin chanel 6 is underway at Pioneer Courthouse Square in Portland, Oregon! It starts today ~ Friday~ and continues through Sunday afternoon, 7/17/11. There is a small admission charge which benfits Impact Northwest.
Friday, July 15th, 9:30 a.m. – 10 p.m.
Saturday, July 16th, 10 a.m. – 10 p.m.
Sunday, July 17th, 10 a.m. – 5 p.m.
July 14, 2011
Well so much has happened this last week. First of all, my author’s copy of my book, TIE ONE ON has many more errors than I noticed at first glance. It now has to be redone. My Editor, Dee now has the files and she will be making the final changes. This gives us the opportunity to change and enhance the photographs so that they will be more the way I had envisioned; so this is a good thing.
Last Friday I traveled to Washington, DC for the Ovarian Cancer National Alliance Conference. This is an annual conference that is a priority for me to attend. The information that is presented by nationally recognized Doctors is outstanding and is on the cutting edge of Ovarian Cancer research and clinical trials. In addition, it is always so inspiring and uplifting to connect with other Ovarian Cancer survivors in a positive and rewarding manner.
After Washington, DC, I travelled to Atlanta where the ICRS (International Christian Retail Show) was being held until Wednesday. This is the largest and most widely attended show of its kind in the world. There are venders, and buyers from all over the world. This was the debut of my book… even though it was the wrong galley. I just could not pass up the opportunity to make the contacts that I knew would be possible for me to make at that show. Portland Firefly made the absolute right decision to attend. I connected with 6 international retailers and at least 50 retailers here in other parts of the United States. The big question now will be if they decide to order my book or not. Most of them, particularly the international retailers, were very interested and excited about TIE ONE ON since there is not another book like it out there anywhere. Actually, many of the domestic retailers were quite excited about its possibilities also.
I arrive home late on Wednesday night (actually early Thursday morning) and had an errand-filled day trying to get ready for Chemotherapy on Friday ~ tomorrow. More about that later….
I hope everyone has a great weekend; I have more to tell…..
July 9, 2011
Portland Firefly cannot keep quiet any longer.
Did you see how she changed her hair style? It is no longer sweet and demure.
Where is the baby’s father?
How can a mother not be concerned with the ‘disappearance’ of a beautiful 2 year old?
Boy did she fool that jury!
July 8, 2011
My correct author’s copy arrived! My book looks beautiful. I am very pleased . There are just 2 small changes that need to be made… a blank page needs to be added and some graphics need to be realigned. The latter was the typesetters mistake.
Now to get some marketing done so peopel will know that my book is available.
July 6, 2011
I have not been able to spend much time writing my blog because there have been so many delays and unnecessary errors regarding my book TIE ONE ON, A Head-Scarf Tying Guide for Chemotherapy Patients.
To say that this has been frustrating is an understatment. Hours each day were spent on the phone with the publisher trying to get things correct. Sometimes the changes would be made, other times they were never made, no matter how many times I requested they be changed. And to cap it all off, the publisher sent the wrong galley to the printer to print my book. After a year since I began this process, and waiting two days for UPS to deliver my Author’s Copy of TIE ONE ON, the copy arrived.
I was so exicted to see my creation… my book was finally in my hands. I couldn’t even open the package, so I asked the UPS guy to do the honors. He was happy to rip open the small package for me. There it was. TIE ONE ON in full color with beautiful teal scarves on the cover. I started to flip through the pages as I walked back into the house. But after a few pages it was readily apparent to me that this was not the copy that I had approved for printing. I was disappointed. I was furious. I wanted to cry, but couldn’t because I was so mad that they had made such a stupid error.
Here I am one week before the biggest book show in the United States – and my book is all wrong! The publisher is supposed to be showing my book there to prospective buyers. More emails, more phone calls, more discussions, more stress. None of which this Cancer- Fighting Warrior needed. We finally arrived at a solution and my book will be presented at the book show. If it isn’t right, they said that they will fix it. We shall see. I am supposed to receive another Author’s Copy tomorrow. But I bet it won’t arrive until Thursday very late afternoon – our neighborhood is the last stop on the UPS route.
July 5, 2011
The weathermen here in Portland have a saying: “Summer doesn’t begin here until July 5th!”
This year the saying proved to be ture. Well actually it stopped raining here around June 3oth; July 1st was beautiful and it stayed a little cloudy on July 2nd. By the Fourth of July we were at 80+ degrees and today, July 5th, it’s back up in the 80′s.
And now comes the complaining…. Portlanders are so used to cool cloudy days that we complain when it gets about 78 degrees because now it is — you guessed it –TOO HOT!
I remember something that occured just after I moved to Portland from the midwest which is famous for its seasonal weather extremes. I was waiting in line at the checkout counter at my local grocery store . The clerk at the checkout counter had initiated a conversation about the weather by stating to the man in front of me in line “Everyone is wearing coats and hats and gloves today. Is it cold out?” His comment was “Yes, it is really cold out. I hope it doesn’t last long because everyone is freezing.”
I was wearing my lightweight midwest winter coat and didn’t feel the need to wear gloves or a hat for this trip to the grocery store so I was interested in the comment. As I went outside into the 38-40 degree air I remember thinking ”if this is freezing cold here in Portland, I am really going to be happy here!” And I have been.
Except now I have become used to the mild temps here and so the heat today (84) is hotter than I like. Well, I do have another reason to not like the heat. It is this new Chemo drug that I am on. Doxil. I cannot go into the sun at all without sunscreen on or my skin will blister. This has presented a challeng when driving, so I keep a quilt in the car and use it to cover up my arms when I am driving if the sun is shining on my hands and arms. But at least I am not over fatigued as I was with the Carbo/taxol drugs.
And so Happy summer! Be sure to wear susnscreen!!!