October 31, 2010
Portland Firefly had Chemo again on Thursday and usually days 3 & 4 are the worst for experiencing side-effects. This week is no exception.
I have been fighting down the nausea and taking my prescribed anti-nausea meds. They work fine except they make me very sleepy and all I want to do is nap the day & night away! I have lots to share with you, but dog-gone-it, I’m just too sleepy to concentrate and write much more than this….
It’s all I can do to fight down the ever present nausea. I’m even too ill to open the door and pass out treats to my cute neighbor kids…..
October 28, 2010
Today I’ll have chemotherapy again. It starts with a blood draw, then I see my new doctor, then he sends me to the chemo room.
I had to restart Chemo three weeks ago because my CA -125 levels skyrocketed to 265 in one month and then to 444 the next week! Back with a vengeance!
I had Chemo on a Thursday and then my girlfriend and I left for Arizona two days later for a trip that we had planned and paid for 7 months ago when I went off Chemo. I tolerated the trip very well and had minimal side effects. My color started looking much better about a week ago and I also was feeling much less ‘symptomatic’; so I have no doubt that the chemo is working. I will have another CA -125 drawn this morning and I’ll get the results tomorrow… but I’m not on ‘pins and needles’ because I know that the chemo is working by the way that I am feeling.
I am really looking forward to my Chemo today because I know that I need it and I know that it is helping me.
I know what the big question is in your mind…. because it is in ours, too. How much time do I have?
The doctor said that he can pretty much guarantee that I’ll be here in 1 year but he can’t address what kind of physical condition I’ll be in. I may have an excellent response from this Chemo and be in very good health or I might be just hanging on. Hard questions with hard answers, but realistic; and that is what I strive to be. I do not want to put my head in the sand and I do not want my Children to be caught unawares and not ready.
All that being said, I expect to be here for many years to come. I have had an excellent response from the Chemo in the past and feel that I am continuing to do so right now. I have much yet to do…..
October 26, 2010
Well, all Oregonians should have received their ballots by now. In Oregon your ballot must be RECEIVED by a county elections office no later than 8:00pm on Tuesday November 2, 2010. Postmarks DO NOT COUNT!
There are ballot dropsites throughout Oregon. You will usually find one at your local library but go to the following website for the exact location of your nearest drop site for your ballot.
or call 866-673-8683
You can also begin viewing the unofficial results on the website at 8:00 pm on November 2nd.
October 25, 2010
Portland Firefly can hardly believe it!!!
Christmas is only 2 short months away!
Well, here in Portland this weekend started with our winter weather. We have had a LOT of rain, and the mountains have snow and all of our mountain passes require chains on your vehicles. So we should be able to get in the Holiday preparation spirit easily!
It definitely is a cold fall and we can tell that winter is on the way!
October 23, 2010
Some say life is too short, others say it’s too long, but I know that nothing that we do makes sense if we don’t touch the hearts of others while we’re here!
October 21, 2010
I’ve had you on my mind since I learned that the cancer had returned. I wanted to write some memorable phrase or a bit of wisdom. My mind is still stumped on what to say.
I do know I will pray everyday for strength for you. I love God and what He can do for all of us, anytime, anywhere.
The above comment was posted on my weblog a few days ago and it caused me to think about the writers dilemma. This long time friend was emotionally impacted by Portland Firefly’s recent setback of Ovarian Cancer reoccurrence. She wanted very much to reach out to me and show her support and concern and love, yet she didn’t know how to do that or what words to use. She had thought about it and wanted very much to say something wise and profound that would bring peace and comfort to Warrior Firefly.
Here is the secret to writing that kind of note. JUST DO IT. Just write what ever is in your heart.
Even if you say “I am thinking of you” and sign your name. You will never know the power that simple message of loving concern has for the receiver. So do not be afraid or shy or anything other than yourself. No fancy card or elegant stationery needed. Just a sweet and simple “I just wanted you to know that I’m thinking of you” goes a VERY LONG way in the heart of the receiver.
And so , dear Michele, thank you for being the faithful reader that you are; I value your prayers and comments. And you see, you did say something wise and profound after all ….
October 18, 2010
Last week, Portland Firefly had the opportunity to teach her sweet, delightful Grandson about his shadow. I wonder if he still remembers that his shadow is caused by the sun?
October 15, 2010
Last week, Portland Firefly had another speaking presentation. ”How Can I Have Ovarian Cancer? I Don’t Have Any Ovaries!” is the title of my talk. I was thrilled to be able to help educate some more women about this horrible, deadly cancer and they were so very attentive to my words.
Last month I spoke to another group of women and they were also attentive and appreciative. I am educating the world a few women at a time…. doing the best I can. Evidently I am getting quite a little reputation as a desirable speaker because one women said that she had heard very good things about my talk from several different sources! I only mention this because I want to speak to as many groups as I possibly can and the better my speaking reputation, the more opportunities I’ll be given to educate women about the symptoms and statistics of Ovarian Cancer.
Both groups presented me with flowers. One was a beautiful amazing orchid and the other was a lovely bouquet and something else that I had wanted ~ hydrangea blossoms. Thank you, ladies for your loving gifts!
October 14, 2010
I think that most of you know that Portland Firefly has had a little setback. Last month, my CA-125 was at 18. Then two weeks ago it skyrocketed to 265. Normal is 30-35 or below. One week later, just before I restarted Chemotherapy, it had made another amazing jump to 444 in only one week. So this is serious in that my cancer is growing so quickly . But the good side of that is that Chemotherapy works best when the cancer is actively growing. And actively growing, it is.
So I had my first chemo of this second go-around last week and was given only one drug – the Carboplatin. Portland Firefly had a lot of side effects from the other drug ~ Taxol ~ so my doctor opted for just the one drug this time. The side effects are minimal ~ still there ~ but not as severe as I experienced before.
In another few weeks , I’ll have a blood test and then we will have a better idea of how this treatment will proceed.
There are many women who have several recurrences of Ovarian Cancer and continue to live with treatment for a very long time. Many years. Primary Peritoneal Carcinoma is little bit more difficult because of the initial late stage diagnosis, yet is still very treatable. There are many new drugs coming available and I have only just begun to be treated with two of them.
Yes, I felt as though the wind was knocked out of my sails ~ or that I had been hit hard in the chest ~ when I read that my CA-125 had jumped to 444 in 5 weeks, but I am still optimistic for several reasons.
#1, I am not as sick as when I was first diagnosed in March/09.
#2, I am in better overall health.
#3, there are many options available to me.
#4, I have a loving family and good support system.
#5, I have confidence in my Doctor.
#6, I had a remarkable response previously and expect the same this time.
But, please keep Portland Firefly right there at the top of your prayer list, please. Thank you.
October 12, 2010
The following update was written by my son after our doctors appointment . He says it best ….
Here’s the update after Mom’s appointment.
Dr. Gosewehr is good, he answered all of our questions and was knowledgeable of all the additional tests, treatments, etc that Mom wanted to ask about. For the additional scans and blood tests those are basically just things that will tell us what we already know – the cancer is back and growing. For things like tissue assay and targeted gene therapy -there isn’t really anything to do the tissue assay on no tumors no fluid, and the targeted gene therapy was more something for down the road as a possibility if necessary. For the Budwig diet, its fine for a “healthy eating/lifestyle” aspect because being healthy is important to fight this. He was familiar with it and has patients that use naturopathic approaches as well. It comes down to the fact that they don’t yet know what combination works for any individual to stimulate their immune system, etc and that is the goal of those approaches – to stimulate the body to fight off the disease on its own. The same goes for Chemo with some people – what works for what person isn’t always easily determined.
We got some details of the CAT scan result. They didn’t see any ascites/abnormal fluid build up in the abdomen. The Dr. did say there was a tiny bit of fluid but that is not abnormal. He saw some thickening on the lining of the bowel. He described it as looking like frosting on the bowel and that is a sign of active growing cancer and exactly where they would expect to see it and he was not surprised to see that given the symptoms Mom has explained she has been having. The symptoms are really the most compelling reason to do anything at this point. If she was feeling fine they might say lets wait a while if you want to, but that’s not the case now.
Decisions of how to treat from now on should be based on 2 things, effectiveness and toxicity (sideaffects).
For the initial treatment starting last March, Mom was getting a combination of carboplatin and taxol. Most of her unmanageable side affects (neuropathy, bone pain) can be attributed to the taxol, and most of the benefit can be attributed to the carboplatin. They do have added benefit used together but given Mom’s personal reaction and side affects to the taxol she would probably have much worse side affects and not an equal amount of benefit.
So for the treatment now. According to the Dr. there are 3 general Chemo options now: carboplatin only, carboplatin and taxol like before, or something new. As Mom said she had a great response to the prior treatment and so they are going to stick with carboplatin. According to the Dr. this is the drug best known to fight this and it has the least associated side affects with it, and we know Mom had a great response to it before. The something new, they discussed a few drugs Mom is knowledgeable of, could be something completely different and new or something new in combo with the carboplatin. There are 22 potential drugs to fight this, so far Mom has used 2. It goes back to what combo is effective for what individual. The Dr. expects the same result this time using carboplatin alone – put the cancer into remission. It could be as good of a response, a better response or not as good of a response. They should know after 2 treatments if it is still effective. If the response is not as good, or if she is not in remission as long as she had been this last time then they will look at adding one of the new drugs.
This treatment option seems like a really good one because we expect an excellent response like before, but without the taxol some of the side affects that were out of Moms control should not occur. there will still be side affects, but Mom has learned to be prepared to deal with some of them and knows how to minimize them. I just did a quick search on side affects and it even says that hair loss is rare with normal dose of carboplatin, so hopefully that will be the case for Mom too.
As the Dr put it “you’ve been to this rodeo before” and that is an asset because knowing what to expect is a big help in being prepared. Other positives are, Mom is not as sick this time as she was when initially diagnosed, she is in better health and additionally mentally prepared. I think she has a great attitude at this point, no “poor me”, just “let’s take care of it so I can get on with what I want to do”. She should be in good enough shape to have a good time on her trip.
I think that covers it.
October 11, 2010
|Christopher Columbus Holiday|
First Landing of Columbus on the Shores of the New World, after the painting by Discoro Téofilo
Today is Columbus Day, the day that we celebrate Christopher Columbus discovery of The New World.
In 1892, President Benjamin Harrison called upon the people of the United States to celebrate Columbus Day on the 400th anniversary of the event. During the four hundredth anniversary, in 1892, teachers, preachers, poets and politicians used Columbus Day rituals to teach ideals of patriotism. These patriotic rituals were framed around themes such as support for war, citizenship boundaries, the importance of loyalty to the nation, and celebrating social progress.
Be sure to fly your flag today!!!!
October 10, 2010
Today is 10/10/10.
There will be many weddings today!!!
October 8, 2010
October 7, 2010
Have you ever seen an angel? I don’t mean a person that you thought was as beautiful as an angel, or someone who you thought was as kind, sweet and loving as an angel. I mean an actual angel.
Portland Firefly has.
Oh, they don’t look like angels with wings and all that. They look like you and me. How do I know that I saw angels? I just know.
I have seen them many times, but there are two occasions that I’ll tell you about. The first one was just after a dangerous December ice storm in Missouri and the second one was when we went ‘swift watching’ here in Portland this year.
I had just arrive at the Kansas City airport about 11:30 pm after a 4 day trip on a bitter, cold, windy December night. Kansas City had one of its worst ice storms ever and the doors of my car were frozen shut under the 1 to 2 inch layer of ice. The parking lot and streets were treacherous. Fortunately, the storm came in from the north, so the car door that was on the south side (away from the brutal blast of the storm) had probably only less than 1/2 inch of ice on it. That was the passenger door, so I had to struggle to get it open and then I had to climb over the center console on my mid-sized cougar while wearing my Flight Attendant uniform. And I always wore skirts with high heels, so it was not an easy task!
After getting into the car and getting it started, I then had to break the ice off of the encased trunk so I could get my crew kit inside the car. Next came the task of trying to clean the ice off of the windshield. When I tried to open the driver’s door from inside the car by pushing out, it finally opened with the loud cracking sound of ice breaking and then falling to the ground in big shards.
The car started and finally I was on my way home. The main highways were very clear and I tried to picture which roads would be the most traveled and therefore the safest way home for me after leaving the main highway. I did really well until I got to one particular intersection not far from home. This road went down a slight incline to a very busy intersection. Isn’t it funny how you never notice whether a street is hilly or not when the weather is good? Well, this was not a good choice, but it was too late to change my mind now. I slowly started down the incline to the intersection and my car promptly veered sharply to the right and did a complete 180! I was now at the mercy of the icy road wrapped inside my cougar cocoon praying that the car would stop before it ended in the middle of the waiting intersection. Well, it did stop, but now it was facing the wrong direction on an icy hill. I started to panic. I didn’t know what to do, so I started to open the door and look around to evaluate my situation. The road appeared to be deserted. It was after all midnight or later. I was getting a little bit scared and afraid that a rogue vehicle might come over the top of the hill too fast to stop and hit me and my car.
And that is when three angels approached my car. These three tall strong young men came from nowhere and asked if they could help me. Help me! Yes! Well, I don’t know how they did it, but they turned that heavy car around on that icy hill and got me safely headed to my next street. They then disappeared just as mysteriously as they had appeared in the first place.
I could see that the roads were going to be impassable for me and I was so shaken up (not to mention exhausted after a long trip) that I started looking for a place to park my car for the rest of the night. There was a nearby strip mall that I was able to drive to and park my car. I called my neighbor who had 4 wheel drive to come and pick me up and take me the rest of the way home.
This happened more than 15 years ago, but I have never forgotten those three angels who helped me out!
Now for the second time that I’ll relay to you.
It was this year and it was our annual family outing to see the Vaux Swifts here in Portland. We had just arrived and were scoping out our spot for the spectacular viewing when I saw them. They looked like an ordinary Portland couple standing there at the bottom of the hill next to the school. She had very short vibrant purple hair the same color that mine was just before I lost it due to Chemo. She was elegantly dressed and was pointing in my direction, showing him something. They were engrossed in their conversation. I would have never taken note of them if she had not had that same color of vibrant purple hair that I had before I lost all of mine due to chemo. And it was short as mine is now along with being purple, so how could I not notice her…..
They were unusual because they had no blanket, no jackets, no picnic basket, no lawn chairs ~ all of which most people bring to this event. Portland Firefly noticed that she didn’t even carry a purse as they easily walked up the steep hill. They then stood off to the side and behind our little group and were looking directly at me. Our eyes met across the crabgrass covered lawn and they both nodded to me. She looked directly at me and gave me a comforting smile that was also encouraging. She was calm, secure, confident and he was too. I felt a peace when I saw them together watching me. I had the feeling that her mission with me was finished and she was handing me off to him as my protector making sure that he knew exactly who I was.
You may draw your own conclusions about these two events as you wish. But Portland Firefly has her own perception of what happened and she prefers to think that there really is “someone watching over me.”
As I grow closer to the things of the next world, I can’t help to but to think that God is answering many of my prayers by tying up the loose ends of my life. He has given me many special gifts over this last year and I’ll mention them one day.
October 5, 2010
Just to recap for you, I had a CA 125 blood test drawn last week just before I left for my friends Funeral in California. My prior results were 12 14 12 14 14 18 . Normal is 30-35 or below. My Tuesday result shows my CA level to be at 265, which confirmed my personal suspicions, as I have been feeling ’symptomatic’ for several months.
I just wanted to let you know that I had a CT scan done yesterday and expected there to be ascites (fluid) but there was none reported. That’s good news, but my abdomen has been gurgling for the last week! And I thought that it might have to be drained again, but it looks like that is not necessary.
At my upcoming doctors appointment, we will be getting the complete CT scan report. I completely expect to be restarting Chemo that morning as well.
I am feeling well and will continue to do the things that I enjoy and have planned to do ~ not only this week ~ but in the months to come. Please gently encourage me to go for daily walks as I have started doing that on my own and I think it does energize me.
For those of you who have seen me recently, I do love my cute curly hair and I’ll be sad to see it go in the trash. But I did stop by the cancer center this morning and I picked up some more head coverings! Like I needed more!
I’m going to be just fine ~ this is just a little setback that we can get through.
I still have a lot of traveling to do yet!! Let’s see ~ there’s the Grand Canyon, Hawaii, Israel, Petra, Egypt, Morocco, Greece & Italy ~ all calling my name! And I want to make a special trip to Disneyland with the Light of my Life and his Parents and Aunt!
And don’t forget my two books that I have to finish. “Tie One On” about how to tie scarves and turbans is almost ready to be printed. “How Can I Have Ovarian Cancer? I Don’t Have Any Ovaries!” still has quite a way to go, but at least I have the format in my mind and much of it is written.
I know that you will all be keeping me in your prayers and I am thanking you in advance for that kindness.
Thank you all for being such loving friends and caring family.
October 3, 2010
Portland Firefly was out-of-town last week for my friend Chris’ funeral.
I flew down to California and was picked up by my oldest childhood friend. We visited in the car as she drove me to my Brother’s house near a beautiful Southern California beach . Each of the three days that I was there, I made a short visit to my elderly Aunts home.
School friends of mine live near my brother so they picked me up and I rode with them to the city where the Rosary service and Funeral were to be held. They were the most beautiful Rosary and Funeral that Portland Firefly has ever attended.
Many of our school friends were there also and it was really so good to see all of them and to get caught up on our lives. At the end of the Rosary service , they asked people to get up and say something about Chris. Well, no one got up right away and there was a little pause and then I heard my name called by the surviving spouse. He wanted me to say something. And I wanted to say something; only I didn’t particularly want to be the first one to do so.
But, as happens in those cases, one pulls oneself together and goes to the front of the church for the sake of the family. Fortunately, I had printed up a copy of the post that I wrote on July 21, 2010 about Chris being one of my heroes, and stuck it in my purse!
Wearing a teal floral top, I started off by introducing myself and telling the importance of my teal top. Do you remember that teal is the color for the Ovarian Cancer Ribbon? Well, not many present at this service knew that, so I was pleased to be able to inform everyone of the importance of teal. I then read my article. The family was very appreciative and I know that it meant a lot to Chris’ husband.
And so Portland Firefly had yet another opportunity to do a little bit of Ovarian Cancer awareness – all with the family’s blessing – while honoring her memory at the same time.