June 29, 2010
I had my second two-month follow-up visit at my doctors last week and I am doing well. Everyone says that I look good (thanks to make-up!) and I do feel good. I still get easily fatigued and I am still trying to get rid of the neuropathy (which can become permanent).
My last several CA 125 results have been bouncing back and forth between 12 -13 -12 – 13 -12. This time it went up a little bit to 14. It was down as low as 7 at one time. The normal range for this test is 30 or below and mine started out at 3000, so I am still in the normal range and really not too concerned about it yet. Doctors also look at ‘symptoms’ and usually do not restart chemo unless one becomes ‘symptomatic’ (exhibiting symptoms). The exception to this would be a rapidly spiking CA 125. If my CA 125 went up dramatically in a short period of time, I would be restarting Chemo immediately.
And so, for now, I shall continue on my course of treatment. What is that? I am glad that you asked….. Nothing! Just living life and enjoying every minute and making moments and memories. I am enjoying my friends and family and planning my travels. As some of the chemo’s side-effects start to wear off, I’ll have more energy and a clearer mind (no more Chemo-Brain) so that I can finish my writings.
June 28, 2010
Last year, Portland Firefly put links to several funny posts from ‘The Best of Craigslist’. As you know, one must be cautious when reading Craiglist as there are unsavory items posted there. The following links are wholesome and funny and you should not be offended by them….so enjoy!!!
Awesome Organ : http://www.craigslist.org/about/best/den/1614955019.html
Shadow Kitty: http://www.craigslist.org/about/best/sfo/1604951280.html
Boat for Sale: http://www.craigslist.org/about/best/min/1603624338.html
Smart Person: http://www.craigslist.org/about/best/nyc/1596308401.html
Peanut Butter Cookies: http://www.craigslist.org/about/best/min/1572392968.html
Personal Assistant: http://www.craigslist.org/about/best/sea/1571652383.html
June 27, 2010
Two nights last week, the America’s Got Talent TV show aired their Portland auditions. As usual there were a lot of flakes and horrible acts, but there were also some pretty spectacular acts as well! The next step for these acts is going to Las Vegas for the competition part of the show and several from Portland were put through to go to Las Vegas.
Some of the acts sent from Portland are:
The 75 year old harmonica player who was a watch maker from Belguim;
The 76 year old lesbian retired teacher who hand-whistles ( and sells her book);
The two sweet blond singing sisters who have Cystic Fibrosis;
The mesmerizing rock-wall dancing couple;
The handsome singer;
The teen-age epileptic young man who flies indoor kites;
The young stunt bike rider;
and the North West’s premier Air Band ~Airpocolypse!
Yes, Portland is Weird and it is that very atmosphere for creativity (weirdness) that lets people develop unusual talents and abilities. I hope that one of our Portland contestants will be the winner!!!
June 26, 2010
Having grownup in Southern California, Portland Firefly was aware of only one ‘Rose Parade’ and that is the Pasadena Rose Parade on New Year’s Day in Pasadena California. Last June as I was sitting in my recliner recovering from chemo, I heard the news talk about a ‘rose parade’. I thought they were crazy because everyone knows that the rose parade is on January 1st, and not in the middle of June! Well, I was wrong!
Known as the City of Roses, Portland has its Grand Floral Parade during its June Rose Festival. Hence the name “Rose Parade” in June! Last year I watched it from my recliner; but this year a dear friend asked me along for the day. I felt that I could handle it as we took our lawn chairs and I could just sit for as long as I needed. After the parade, we wandered around the Waterfront Park until it was time to leave for home. We had a great day and a lot of fun. I might even do it again next year….
Here are some pictures from the parade. I hope you enjoy them. If you scroll over each picture, a title will pop up to tell you which float it is! Enjoy this on-line parade!
June 25, 2010
This Saturday morning ~ June 26th~ early~ just before sunrise, there will be a special eclipse of the moon. And for those of us on the West Coast it should be spectacular!!! It will be worth getting up early to see this sight; you can take a nap after breakfast!!! Look low and to the WEST just before dawn. Begins at 3:17 am; greatest effect at 4:38 am. I know …Yawn!!!!
Although the eclipse is only partial, it will be magnified in size and charm by the “Moon Illusion”–a result of the eclipse occurring close to the horizon from viewing sites in the USA.
The eclipse begins at 3:17 am PDT (10:17 UT) when the Moon enters the sunset-colored shadow of Earth. By 4:38 am PDT (11:38 UT), the moment of greatest eclipse, 54% of the Moon’s diameter will be covered. From beginning to end, the event lasts almost three hours.
June 24, 2010
Well, life is pretty pathetic for Portland Firefly. Being fatigued, she just spent an hour of her life watching (yes, actually watching) Maury. Yes, the Maury Povich Show.
Today they did DNA test results…. Again…. Women who had a baby had the suspected father DNA tested.
I have seen little bits of Maury before when I was channel surfing, but I usually would never leave it on that channel very long. Today was different. I actually got caught up in all of the drama and found myself aweing and oowing over the adorable babies and looking carefully at the pictures trying to make my decision if “the baby looks like the suggested father” before the reveal.
Most of the babies were so-o-o cute. I think that is what hooked me into watching. (Well, it is as good of an excuse as any)!
I suspect that two of the women chose the previous sexual partner that has the most promise for a high income/ child support. They were sadly disappointed and the look of shocked realization ( “It was the other guy?!!!”) was evident on their faces. One guy brought his mother with him, another brought his fiance and still another brought his wife. Were these guys fooling around or what!!!
Most of the DNA results showed that the guys were NOT the father. But the married man with his wife also has 3 boys at home and was shocked when shown to be the father of this cute little girl. His wife said that they would do the right thing and be present in this child’s life and support her. WOW! The wife is going to make sure that her philandering husband will be responsible for this out-of-wedlock child. She is a classy woman. He is a creep and he knows it. I wonder how long that marriage will last? Oh, by the way, he presented himself on-line as single when he was obviously married.
Now that I have watched a complete show of Maury, I won’t ever have to do that again! But it was sort of fun while it lasted. I think I’ll get a good book!!!!
June 23, 2010
While I was outside ‘playing’ with my flowers, it started to sprinkle. Since we have had the rainiest Spring on record (since the 1800′s!) Portland Firefly just continued with what she was doing ~ potting petunias. The sprinkles turned more frequent, but since I was wanting to finish this small project while I was still dirty, I kept on with my plantings. I just had a few minutes more until I was finished when a plane flew overhead.
Looking up, I see the plane through the misty rain and I am quickly transported to the interior of a MD-80. We are on final approach to Lambert Field in St. Louis, Missouri and I am sitting on the galley jumpseat strapped in for landing as I hear the rain hitting the fuselage. This particular jumpseat faces aft and you are looking at the galley coffee pots and the ovens and the beverage service carts facing you as you sit on the bulkhead seat. I make another careful mental check of all the storage latches. Yes, everything is latched down tight and proper as it should be.
The plane is in a rainstorm as it approaches Lambert Field. This is not uncommon, but today the rain sounds particularly hard. “Hu-u-m-m,” I think” perhaps we are in a little hailstorm. There were a lot of grey clouds outside just before I sat down and strapped in myself .” I look at my passengers (watching to see my reaction and for reassurance) and smile. I am not concerned. I am just noticing the fact that it is raining…. maybe a little hard…. no need to worry. I know these pilots and have flown with them off and on many times during our long careers. The plane sort of bounces a little bit in the air. I’ve lived in this air for so long, I can feel that the pilot has complete control and that everything is ‘normal’ for this type of weather. I feel the plane descend even more and soon we break through the clouds and I know by the passengers actions that they are looking at the ground below us. I think it is always a comforting sight, exciting and exhilarating at the same time to see that we have almost arrived at our destination. The plane wiggles ever so slightly as the pilots manuever into position for the runway, the rain still audible in the now quite interior. Planes get quiet in ‘inclement weather’ as passengers stop talking to listen and observe what is happening around them.
I am calm and at ease, however I am also very attentive. One never knows when she will have to use the years of Emergency Training that she has had. Years of flying also tell me that so far, this approach has been routine. I again smile at my passengers, as I wait and listen to the sounds of the engines. The engines sound fine. I tighten my shoulder harness and seat belt again just before the plane touches down. It is a habit that I have developed over the years and I will continue to make that safety belt as tight as I can stand it for landing and take off…even when I am a passenger.
This landing, like most others is solid and routine. Once again I am ‘grounded’ for a short while.
I finish planting the petunias and turn on the watering hose to give them a good solid drink of water before I go in the house. Somehow, it seems silly to be watering plants in the misty rain, but the dirt was dry before I started planting and it isn’t raining hard enough to soak the new plants roots. Now every time I look at my petunias I think of that misty airplane sighting and the memory it provoked.
June 22, 2010
While sitting in church on Father’s Day, I glanced ‘over there’ and saw a man who resembles one of my step-fathers. My Mother had a zest for life and I had the privilege of having more than one ‘father figure’ in my life.
It is strange, because I had been thinking of my Father often during the previous week and the fact that his passing last year means that I no longer have anyone to purchase Father’s Day cards for was not lost on me.
I had not thought about Bill for a very long time as he passed away almost 25 years ago. He would come to mind mostly when I would find an item of his in my Mother’s things and then it would be a remote and fleeting thought. Usually I would set the item aside to mail to one of his daughters. This was my Mother’s last marriage and I was married with children of my own so his daughters and I never really had much contact with each other. Those four girls (lovely women now) did make a huge effort to contact my Mother and I as she became ill. The four of them sent ’the most beautiful’ floral arrangement (a natural rustic basket arranged with all white flowers ~ stunning!) for her memorial and one of them drove 5 hours one way to attend. And so my focus was more on them than it was on their desceased Father.
But this morning that changed. I had decided to sit on the other side of the sanctuary today and there was a man who resembled Bill so strongly that I actually just sat and stared at him several times. Oh, I tried to not be obvious about it, but my eyes kept being drawn that way. As I would look at him I started to think about how kind and loving he was to my Mother, my children and myself. He was very intuitively thoughtful with no ulterior motives. He gave because he wanted to give. He was a warm loving man who had experienced a terrible thing as a child – witnessing the violent death of his mother. Of course it affected him his entire life. How could it not? It is a shame that the demons of his life possessed him to the extent that they did for I would have liked to have seen the jewel of a man who lay hidden beneath the terrors of his childhood.
I will one day. So will his daughters.
PS: He always wore a ruby ring set in yellow gold. Before leaving the midwest I made sure that the ring was given to one of his daughters because it really is their family heirloom. And that is the jewel that I think of when I think of this ‘jewel of a man’ ~ a brilliant ruby.
June 21, 2010
June 19, 2010
There are sign all over Portland that state “Keep Portland Weird”. This contributes to the creativity that is found in this beautiful Rose City.
Well, one of Portland’s ‘weirder’ events takes place tonight. Tonight at 10:00pm the naked bike ride ‘ takes off ‘ in southeast Portland near the Eastbank Esplanade and Hawthorn.
Portland Firefly will not be taking part in this event! This is also a very good reason why one should replace the seat on a used bicycle!
June 18, 2010
Portland Firefly wishes all of the Fathers out there a very Happy Father’s Day!!!
June 16, 2010
As you know, Portland Firefly lost all of her eyebrows and eyelashes during her 13 months of Chemotherapy. I would pencil in my eyebrows, but you can’t put mascara on something that isn’t there!
It is now three months after my last chemotherapy treatment and my eyebrows and eyelashes are finally growing in. I actually had to pluck the stray hairs from outside my eyebrow line! That is something I have not had to do for 16 months! Last weekend, when I applied my mascara, I could actually see my lashes again! There were only a few times during the course of my chemo that I choose to wear my false eyelashes and that was for special occasions that came up during my treatment. Now I can put those false eyelashes away for another ‘rainy day’. And I ‘ll have to go and get some more mascara!!! Black , of course!
June 15, 2010
Portland Firefly just watched a video that discusses “Can we eat to Starve Cancer?” The process has to do with increasing blood vessels or inhibiting them and is called angiogenesis. In the case of cancer, there are too many blood vessels (feeding the tumors). The premise is what you can eat to influence the production (or non-production) of these blood vessels.
The video is fascinating and even though it is a little bit technical, William Li, the presenter makes the information understandable for most people. The video is 20 minutes long, but be prepared for it to go by quickly. I even decided to watch it a second time, because I found it so interesting!
William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.
In this video, Li reminds us that the drug Avastin is an angiogenesis drug. Avastin has just recently been approved for treatment in Ovarian Cancer cases. In fact Portland Firefly has a friend who has successfully been on Avastin for two years for treatment of her Ovarian Cancer.
June 13, 2010
This morning, when I woke up I was myself; but I soon became my Daughter’s Mother.
Poor Firefly, what is she talking about?
Stick with me and I’ll explain…. I am having a period of “Mom Pride”.
Some of you have met my daughter who is very talented in many different areas. She has been involved in the ‘tech’ (read that computer) industry for probably at least 13 years. There are several of her jobs that I like to brag about….. one being her association with iAmaze (during which time that little start-up created Slideshow –yes , THAT slideshow). Then she went on to become a Vice-President of Marketing for AOL/Time Warner ( PS: Correction below). She helped organized the LA Tech community and continues with organizing events for several groups in addition to her job. She has a natural ability to merge the worlds of the technology with marketing and personality. A rare combination because most ‘tekkies’ are not very good ‘people’ persons and she is both!
Anyway, this morning I set my alarm bright and early so I could log on to a live streaming of the Humanity Plus (H+) Conference that was being held at Harvard University. Yes, that Harvard. Why? I am so glad that you asked! My Daughter was a speaker at this conference and I absolutely wanted to see her presentation. She did an excellent job and it was very cool to see her in that environment. Her topic: “How do we create I”; it has something to do with emerging technology and personal identity.
I spent the first couple of minutes just watching her and being amazed at how much she resembles her brother… How come I never noticed that strong resemblance between the two of them before now? Then I noticed how poised she is. I still see that cute little first grader with her bouncy pig-tails. Today she is sporting a more sleek hair style — but Mom can still see the remains of some bright ( is that magenta?) hair dye on the ends of her naturally almost platinum appearing locks.
I notice how professional she appears even though I can only see what is above the tall podium. Most of the speakers at this conference are men and only a small percentage of women were invited to speak. More Pride. Sorry, I can’t help it! What is that she is wearing? Is that a tee-shirt with some sort of writing on it? Oh well, somehow it still looks professional with her jacket over it. How does she do things like that and get away with it? She is amazing! Then I notice the earrings…. they were my gift to her last Christmas. I fell in love with them when I first saw them and they suit her perfectly. She has since told me that they are her favorites and she wears them a lot. I smile when I see them on her.
Then I start to listen in earnest to her words. Her delivery is a wonderment to me. Calm, quiet and precise, her voice is serene. What happened to the hysterical teenager that grew up in my home?! Has she gone completely away? (I doubt it). Her fun-loving personality shows through in an occasional point that makes the entire room start laughing with her. She is relaxed and confident and unflappable even when the moderator reminds her that her time is nearly up and she unflappably skips to the ending of her well-prepared speech.
I am sitting up straighter with so much pride! Wow! She is a great public speaker and I am so glad that technology has given me the opportunity to not miss this occasion. Her speech ended with a quotation from Alice in Wonderland … I hope I got the right one…
“‘Who are you?’ ‘ I don’t quite know. I was one way when I woke up this morning but I think I have changed several times since then.’ “
To me, the applause seems much more enthusiastic than it was for the previous several speakers. But then, I am being quite objective! ( yeah, sure!) She has become a wonderful, delightful contributing member of society. What more can a parent ask for? And so, off and on (especially today), I shall not be myself… but I shall be… my Daughter’s Mother…. filled with pride and love.
PS: Correction…. My daughter insists that she was never a VP of Marketing for AOL/TimeWarner. She was a Project Manager for them. All I can remember is that they had her flying coast to coast for big projects and product launches and they practically worked her to death. Maybe it is because she was a Vice-President for several internet start-ups prior to that time, that I got her titles confused. Anyway, she is a remarkable young woman that I would admire and respect even if I wasn’t related to her. She deserves all the accolades that she receives because she has worked hard for them and she has earned them on her own!
June 10, 2010
Tonight, Thursday, head on over to Portland’s Director Park for tasty eats and cowboy fun :
Country Food Fair:
- Tonight 5:00 – 9:00
- S.W. 9th and Yamhill
- All proceeds benefit Oregon Food Bank
The family-focused fair features cowboy poetry, a story-telling circle, craft booths, roping tricks & lessons, a stick-horse rodeo for children, a barn dance and more.
The event is sponsored by Country Natural Beef partners, including Burgerville, New Seasons, Whole Foods Market, Bon Appetit and Food Alliance.
On the affordable menu: Burgerville’s Country Natural Beef Tillamook Cheeseburger and Veggie Burger, New Seasons Markets fresh-squeezed lemonade ($2) and free grilled asparagus, Whole Foods Market’s Country Natural Beef smoked tri-tip sandwiches ($3) Bon Appetit’s Ribs ($1) and Oregon strawberry shortcake ($1.50) and more!
June 7, 2010
Background: I was diagnosed with Primary Peritoneal Carcinoma in March, 2009 and began Chemotherapy immediately. In May, 2009, I had surgery and then restarted chemotherapy a few weeks later. In October 2009, I was off Chemo for about 8 weeks and then the end of November 2009, I restarted what is called consolidation or maintainance chemotherapy. It was to last for one year.
Consolidation Chemo has pros and cons. If the standard regimen of Chemotherapy did not get all of the cancer cells, then hopefully, the consolidation chemo will zap the rest of them. Some feel that consolidation chemo does no good at all. One is either cured by that time or not. And it will be just a matter of time before the cancer returns. This cancer almost always recurs. If that happens, then I’ll be back in chemo right away. Many patients have 2,3, 4, 5, or 6 recurrences. The key is how soon the first reoccurrence happens. The longer the time from the end of the first treatment and the onset of the first reoccurrence, then the better for a longer term survival.
Ever since my first chemo in March of 2009, I have experienced side-effects; some of which can become permanent. Even though I had a remarkable response to the chemotherapy, my Doctor has always been keeping an eye on the side-effects. In January 2010, she expressed concern about these issues and we decided to watch and pay closer attention to the side-effects over the next two months. During that time, Portland Firefly became progressively fatigued and other side-effects either came up or continued.
The CA125 is the blood test that is done to check the progress of my cancer and it continued stable from December through February, March and April. That information added to the side-effects that were wearing out Portland Firefly led us both in the same direction. And so we made the decision to discontinue the consolidation chemotherapy in March 2010.
This decision comes with much hope. Number one, we hope that the prior chemotherapy took care of this disease and I am cured. Number two, if not cured, then we can hope that the treatments that I received will stave off this disease long enough for me to enjoy my life again. Number three, Portland Firefly was just so worn out that she had no real quality of life. I was so fatigued that I could hardly take care of myself and my home. Travel was out of the question as were many local events that I wanted to enjoy.
What is the biggest thing that I hope to accomplish by going off of chemo at this time? Portland Firefly hopes to be able to reclaim her zest for life and to bask in the beauty and the joy that is this wonderful world. I can only do that by having a decent energy level and so that is my focus for the next year at least.
June 6, 2010
As you know I had a terrible cold virus that included fatigue, coughing, a slight sore throat and an unusually high fever (102). It lasted a full five and a half weeks!!!! I feel as though I finally have what can be considered my ‘normal’ energy level back. I say considered normal because I still am not anywhere near normal as far as my energy level goes, it is just what can be considered normal for me a this time.
I was reminded this week that it can take from 6 months to a full year after chemo stops for one’s energy level to return to near normals! UGH!!! One year! I have too much to do this year to not have lots of energy! I guess I’ll just have to keep pushing myself to get out and do things and then rest when I can.
June 4, 2010
This is the week for the Portland Rose Festival. There are many activties planned. Be sure to click on the Rose Festival link at the end of this post to find out more about the festivities over the next two weeks.
The Starlight Parade is Saturday, June 5th, 2010 at 8:30pm. It will be televised live at 9:00pm on KGW NewsChannel 8.
The Grand Floral Parade will be on Saturday, June 12th at 10:00 am. Again televised live on KGW NewsChannel 8.
The Dragon Boat Races are planned for Saturday, June 12th and Sunday, June 13th.
For more information go to : http://www.rosefestival.org/
June 3, 2010
Here in Portland it is Rose Festival Week and there are many special events planned. Wednesday June 2, to Sunday June 6, 2010 is Fleet Week on the Willamette River and if you want to see a lot of boats, this is the week to do so. Portland is the only inland deep water port in the world (I think) and so it is a pretty special place. But those of us who live here already knew that!
Naval vessels from the United States Navy, U.S. Coast Guard and the Canadian Maritime Forces arrive from around the world for a four-day visit to the City of Roses. Ship tours will be available daily. It is located along Tom McCall Waterfront Park’s esplanade seawall from the Steel Bridge to Waterfront Village. Admission is free (on a first-come basis as time allows)
– ships are outside the Waterfront Village gates.
Due to current world affairs, public tours of Fleet Week ships will be limited and may be cancelled without notice.
Because the ships will be arriving during the week (mostly on Thursday) and leaving on Monday, there may be bridge closures for up to 15 minutes at a time as the ships pass underneath them.
Public tours will be on a first-come basis, usually during these hours: 9:00 a.m. – 4:30 p.m.
(Note: Tour lines will be closed at 3:30 to allow tours to be completed by 4:30.)
Note: Ships set their own schedules, so some may not offer tours during these times.
Visitors may be subject to personal search and no bags, strollers or wheelchairs will be allowed onboard. There will not be any ‘holding area’ for personal items and visitors must be able to maneuver on board the ships, including climbing narrow ladders.
June 2, 2010
Well, May, 2010 ended up being the third rainiest May in Portland History. We had more than twice the amount of precipitation that we normally have and it was also quite cool.
I had my surgery last May and I remember it was so hot that my plants had to be watered twice a day or they would die. That was something that was difficult for me to do after my major surgery and it was areal struggle to keep them alive last May.
This May was the opposite story. I had to keep them out of the rain for a few days so that they wouldn’t drown!!! The three-month sustained release fertilizer that I incorporated into the soil around my pansies was ‘released’ during one month! Oh, are my pansies tall and full! Then the rain beats them down and now they are getting all leggy! But I have enjoyed the bright colors that they have added to my world this dreary rainy May!