October 4, 2012
The art of writing is the art of discovering what you believe. ~~ Gustav Flaubert
September 29, 2012
Dx IIIC in 3/09 with PPC, Ive been in almost constant chemo for 43 months….. only had 9 months off here and there. I forget how many recurrences I’ve had — 5 -6- -7-.
Theses last 6 weeks have been particularly difficult. The three months prior to that, my ca climbed to 4344 while on differerent chemos. Last ca was 5456 -still climbing.
I’ve beeen on cytoxin for the last 2 1/2 months… with lots of side effects. Mostly in bed the last few weeks. tired.
I get ascites drained twice a week —any where from 3 liters to 4 1/2 liters each time… Then I must go for hydration …. then I’m exhausted….just trying to help my body heal and praying that that the Cytoxin will finallly start killling the tumors.
I feel miminallly better than I did 5 weeks ago. but I can no longer clean my house, drive, shop, or even take my dog for a walk. I saved money for a trip to Israel and that is what is paying for these necessary sesrvices. even have disabillity sticker for my drivers…
I’m prettty tired, but fatigue is a side effect of cytoxin. The worst thing is the ascites….I get so full of cancer fillled fluid that I look 9 months pregnant and cannot breathe easily. Then relief after drainage, but not a fun procedure… 9 tiimes so far… I’m too tired to even go out to lunch!!! no fun!
Please keep me in your prayers that this Cytoxin will stop the Ascites and help bring my numbers down…..
Warrior Firefly lives here and is Loved!
September 25, 2012
As you know I have been very ill for many weeks. I have now had two rounds of Cytoxin and I do think it’s helping. But there are a lot of other very unwanted and new side effects that have joined in the act.
I now have to have almost daily hydration sessions at the doctor’s office. My abdomen is swelling up with liters and liters of fluid that must be drained twice every week….. but more on all that in another day or so. This little post is just to let you know thar Portland Firefly is still fighting her Warrior Battle bravely and consistently.
Please keep me in your prayers…….
September 16, 2012
So let’s strive for the things that bring peace and the things that build each other up.
September 12, 2012
Success doesn’t make Champions; Challenges do.
August 30, 2012
Well as you know, Portland Firefly has been very ill. My Cancer tumor indicator (CA- 125) numbers have been very high (30 is normal). My numbers have been hovering in the 4856 range for three months now ~ even chemo cannot bring the number down and actually I have been feeling very ill.
My Son accompanied me to my doctor’s appointment on Tuesday and the doctor drained an additional liter of cancer filled fluid from my abdomen (I felt much better immediately) and then started me on a new chemotherapy. We are praying that this one will work since my cancer has not seen it yet. It is called Cytoxin.
I am writing this on day two after this new chemo was administed and I am doing OK. I also recieve a ‘cocktail’ of other drugs along with the chemotherapy so I usually have energy for a day or so and then I crash about the middle of day three and stay out of commission for about a week. But since I have never had this drug… lets see how I react to it!
Update: Very tired…even missed phone calls due to my chemo coma (so tired I didn’t hear the phone). But in a weird way, I feel like it is working…. Very nauseated… very tired… very hopeful…. prayerful…
August 25, 2012
You’re not like the rest of them; someday the best of them will realize they were wrong.
Be proud of what you are and remember, Difference is the most common type of Ordinariness. So you do fit in. Be Brave!
August 23, 2012
I was not feeling well the last few days ~ actually starting last Thursday while I was in Dallas at my annual Harmonica convention (which I was too ill to attend last year).
As of Sunday night I knew that I was more than just extremely tired so I moved my blood work to Monday am and requested to be seen by the PA (Physician Assistant) as my Doctor is on a family emergency this week. She (PA) saw me on Tuesday afternoon and my CA 125 is now higher than it has ever been before… 4856. (last one was 4343~ 30 or below is normal).
My suspicions were confirmed as she sent me to the hospital for a CT Scan which showed ascites (fluid accumulation in the abdomen). I was very uncomfortable as I looked like I was 9 months pregnant –Not kidding! I could hardly breathe, and had no appetite and felt very ‘toxic’. I had to wait until Wednesday morning until they could insert a port into my abdomen (yes, it did hurt) and draw out the cancer filled fluid — There were 3 liters and that is 6 1/2 pounds. I started to feel better almost immediately.
This means that this chemo is also not working and I will see my doctor on Tuesday morning for a reevaluation of the situation. I have ‘gone through’ about 5 chemos at this time.
I am still very worn out and must try to build myself up with protein before they knock me down with a new chemo again.
I am starting to get tired.
August 13, 2012
Andrew De Leon has been a crowd favorite since he first set foot on the stage. America wants him back!
August 6, 2012
Experience is the hardest teacher, because she give the test first and the lesson afterwards.
August 2, 2012
What is the difference between Morning People and Night People? It boils down to this simple explanation….
At 5:30 in the morning, when the sun is streaming in through the windows, a Morning Person gets up and makes coffee while a Night Person draws the blackout drapes and goes back to sleep! Which are you?
August 1, 2012
I had a marathon day of errands to run today. So about 1:30 I was pretty hungry and was just getting close to Costco. It has been years since I’ve had a greasy, cheesy, everything, yummy slice of Costco pizza. Well, today the fast ended! I must have been really hungry while out doing my errands because it tasted so yummy and went down so easily and quickly. Firefly was actually happy to stop for red lights so I could finish eating my lunch while driving to my next errand!
July 30, 2012
Last Thursday, my doctor increased my chemo dosage by 25%. It sounded like a bit much to me at the time, but I am only the patient so I deferred to his expertise…besides we have to attack this aggressive cancer! And I had been doing very well on the lower dosage.
Well, since chemo on Thursday I have been sleeping in bed ever since. That’s for four days and four nights…. I just can’t seem to wake up! Even though I try, I just want to go nitey-nite, day and night. Sunday, I managed to stay awake for four hours after I took a nice shower; but then I had no trouble snuggling back into my little bed cave and going fast asleep for a long sleep.
I just came back from taking sweet little Mercedes for a little walk and honestly, I feel like I am the living dead… a zombie …. It is all I can do to just take little puppy for a short walk.
My brain is so-o-o-o-o foggy and It feels like I just cannot wake up. And I’m not even on any drugs!
Still trying to get the cobwebs out today!!!!
This is a powerful Chemo…lets hope it kills the cancer!
July 27, 2012
Check out the adorable Google Doodle for today Honoring Sports. http://www.Google.com
July 26, 2012
The only reason for being a professional writer is that you can’t help it. ~~~Leo Rosten
July 25, 2012
Well, Portland Firefly owes all of my readers an apology; she is completely human. I really thought that the judges would give us their Wild Card choices tonight, but it seems that didn’t happen. With the exception, of course, of Sharon’s comment that she would call back the male clogging dance troupe of All That.
Oh, how I wanted the suspense to end tonight! Oh, how I wanted to hear that Andrew De Leon is going through to the Wild Card round!
Andrew De Leon fans…. we just have to wait! And it could be a long wait because the Olympics are now taking television center stage and America’s Got Talent will not return until Tuesday, August 14th, 2012. It’s just too long of a wait. I hope that Andrew doesn’t give up… that he continues practicing; because we know we will see him (somewhere) again soon! NBC cannot ignore the popularity and the ratings that this young man will bring to AGT.
When will we know if Andrew is going through to the Wild Card round? Currently, AGT has been promoting the YouTube video acts. Maybe they will be seen first on Aug 14th with the Wildcards coming in the next week on August 21st, 2012. Last year, the wildcards were announced only one week prior to appearing on TV. So at the latest, I think the Wild Cards will be announced on Wednesday, August 15th, 2012. In any event, we all must play the waiting game….
PS: In the past each judge chose 4 wild card acts to perform again for a total of 12 wild cards.
Scroll down to read additional posts that give you more information on Andrew De Leon.
July 18, 2012
Firefly has been so hungry today. I wonder why? Hummmmmm…. Maybe She is finally feeling better! I think that must be it! Thank you for your prayers.
July 15, 2012
Saturday was a really rough day for me. I had a ‘must attend’ event and it took me hours to get ready to go. I’d do one little thing (fix tea, take a shower, etc) then I’d have to lay down and rest for a while before I could do the next thing to get ready to go.
Fortunately my dear friend drove and it was a short sit down event. I felt OK while sitting down and I thought the fresh air would ‘work wonders’ for me but it didn’t.
By the time I came home, I was bone tired, exhausted and even though the house was a toasty 83 degrees, I was so chilled that I had to dress in multiple layers… Even hot tea and hot soup didn’t stop the chilling. Finally, dressed in warm winter long underwear, warm jammies and socks, and bathrobe (with a hat on standby) I gathered all my blankeys and went to bed at 7:30 pm falling immediately asleep.
I awoke about an hour later covered in sweat, so the fever broke and the chilling had stopped. This means that my body was returning itself to its normal way of controlling my body temp which is a VERY good thing, because I was worried when I went to sleep at 7:30. I had never been so chilled in all my life.
Perhaps it means that this Chemo ~ Gemzar ~ is working its magic on my cancer!! That would be nice! I did find out that chilling can be side effect of this particular chemo drug…. boy did I experience it to the max!
Today I will do nothing , but hang at home… I’m still pretty worn out and foggy ~Chemo brain~ so I’ll just take it very easy today. I hope you have a great Sunday…..
I even forgot that yesterday, July 14th is Bastille Day, the French Independence Day. Woah… if you have never been in Paris on July 14th …What a party!!!
July 12, 2012
Today, Firefly has her second chemo of this month. My new chemo schedule is two weeks on chemo, the third week off, then start all over again. This is a more rigorous chemo schedule than I have ever been on during the last three and 1/2 years. I am pretty tired right now and looking forward to a few days of not having to do anything! This new chemo schedule consists of a new chemo drug ~ Gemzar which seems to be making a little bit of headway against my aggressive Primary Peritoneal Carcinoma (PPC). PPC is an aggressive, rare type of Ovarian Cancer.
I actually have been feeling pretty well during these last 5 weeks of Gemzar treatments, able to do most of my desired activities, and only experiencing mild nausea. Yes, I do take anti-nausea meds, but I have had so much life-saving poison over the last three and 1/2 years, that my body just gets tired of it all. Remember, every anti-nausea med also has a corresponding side-effect.
So… chemo today; then I have next week off; then Firefly sees the doctor and starts all over again the following week. We’ll do my blood tests (CA-125) just before I see my doctor in 14 days. That CA-125 result will tell us if this new drug (for me), Gemzar, is actually attacking my cancer. Let’s pray that it is working against the cancer.
July 11, 2012
If you watched last night’s AGT, you heard the exchange between Howard and Howie. Sharon wisely kept her mouth closed during this ‘Made for TV Ratings” battle. For that is all it was.
Now Howard has changed his tune! He is saying that Big Barry doesn’t deserve to go through. He makes it seem that Howie wanted Big Barry in the quarter finals. NOT TRUE! Howard is the one who pushed for Big Barry to go to the New Jersey PAC stage. Now Howard is backtracking and trying to mollify everyone in the United States by saying that Big Barry took the place of one of the more talented contestants like Andrew De Leon or Flo Jo’s Daughter (Mary Joyner). Howard is so full of it! Perhaps, Firefly should say Howard is so full of Howard that he has no room to entertain any other opinions except his own. Oh, he knows how to get ratings… even if it means lying, which now Firefly sees that he is quite capable of doing on a large-scale. No humility for him, no apologies made by that egotistical judge.
Anyway look at Andrew De Leon’s Austin Audition (
) and when you do, please notice how Andrew and Howard are practically dressed identically!!!! Both completely in black.. tight black jeans, black tee-shirt with a black leather jacket! Howard has long curly hair and Andrew has long straight hair. Then Howard wears dark glasses while Andrew wears dark eyeshadow! It gives the same effect. Yet Howard is as rude as can be to polite Andrew, who just deflects the insults that Howard keeps hurling at him. Yes, Andrew is my hero. Howard is a coward. Exactly what makes one so capable of attacking another human being so ruthlessly? Whatever happened to kindness and civility?
The only good thing about last night’s AGT is that the word Wild Card was mentioned. Now I’m sure that Andrew De Leon and Mary Joyner will both be called back for the AGT Wild Card episode, but will they be available???? American Idol is currently having auditions around the United States. Hummmmm………
July 2, 2012
Well here is another photo of Andrew! He has just finished singing in Austin and is looking toward his family as they applaud and cheer for him.
In his Austin Audition song of O Mio Babbino Caro by Puccini he received a standing ovation from everyone in the auditorium and he was sent to perform for the three judges in Las Vegas.
He actually sang pretty well in Vegas, but the judges were very harsh in their evaluation of him and sent him home. More about that in a later post.
I would like to tell you a few things about flying to Las Vegas. First of all, flying is one of the most stressful activities that one can do. Especially in today’s world of personally invasive TSA (airport security) searches. I have flown extensively for many, many years. I am very comfortable in airports and on airplanes. But TSA and the security searches have taken the fun out of flying. Even Professional, Emotionally Strong Firefly was actually reduced to tears at LAX Security Screening after a humiliating pat down a few years ago.
Anyway, Andrew had never even been in an airport much less on an airplane before he was sent to perform in Las Vegas. Realizing the magnitude of how important this Vegas performance was to his advancing in the AGT competition, you know he was nervous. Now, he gets to navigate the vicissitudes of the Austin airport (thank goodness, it wasn’t Dallas!!!). Check in, check bags, get boarding pass, proceed to security, take computer, iPod and make up out of bag, take off hat, shoes, belt, jewelry, jacket and then pass through the metal detector/body scanner. Now you have to remember to reclaim all your items and repack and get dressed all over again! This time in public view!
Now you get to head toward your gate. Thirsty? A bottle of water will cost you more than a soda at the airport. What would you purchase? Right! What seasoned travellers do is to take an empty water bottle through security, then fill it up for free at the water fountain next to the restrooms. You are already dehydrated from getting up early, all the excitement of the upcoming events, the drive to the airport, and standing in numerous lines. So hydrate!!!
Now you get to sit in the gate area waiting for your seat section to be called to board the aircraft. Finally you see the Flight Attendant at the gate and give her your boarding pass, schlep down the jetway, and finally cross the threshold of the craft. Where is my seat? Oh! Ok, It’s row 12, seat B. Hummmm. I hope it’s not a center seat. Ugh, it is a center seat. You stow your bag in the overhead and sit down and figure out the unfamiliar seat belt latch as it is different than car seat belt latches. Now its time for the F/A Safety demo, the plane leaves the gate, and finally is in line for take off. Take off is awesome, thrilling, powerful and exciting.
I suspect that his flight had to make a stop in Dallas, possibly with a plane change to Vegas but I hope not.
Did you know that the air on the plane is recirculated and very, very dry. No moisture at all. If someone near you is coughing, in three days you will probably get whatever it is they had. I always take Airborne and echinacea WHENEVER I fly. I can’t afford to catch anything at this time of my life. And neither can Andrew.
Did you know that you dehydrate one cup of water for each hour of flight? That is why you should only drink water when flying. And you should consume one glass of water for each hour of flight. Coffee, Tea, Alcohol, and Sodas all cause further dehydration. If you must have some flavor in your water, then mix half water with half juice — too much sugar in juice to drink alone! Especially airplane juices!
Just what does happen when your body becomes dehydrated? Your brain and your muscles dehydrate and your brain cannot think as well. Did you realize that vocal cords are muscles? I think that is why so many of the singers had ‘difficulty’ in Las Vegas. I think they were all dehydrated! They had dry stiff vocal cords. Add to that the hot, dry, dusty Vegas air; throw in some musty air-conditioning and it is amazing that anyone can sing in Vegas at all!
Finally you arrive in Las Vegas…. The Desert Oasis that is powered by gambling and neon lights. It will be hotter and drier than you can imagine. Vegas is also very dusty and many people have an allergy to dust and don’t even realize it. More problems for some.
Well, I think that the reason so many of the singers had difficulty in their Las Vegas performances is because their bodies, which are their instruments after all, were not hydrated. Vocal cords are muscles and need to be well hydrated to vibrate properly. If you add hot, dry, dusty desert air and nervousness to the mix, then there you are with the makings of a less than stellar performance.
But we are still enamoured of Andrew’s unique talent and know that he will do well when he is called back for the Wild Card round in New Jersey. I figure he has about 4 weeks to perfect 5 arias and get some well-grounded live performance experience before he is invited to report to the New Jersey Performing Arts Center for the Wild Card show. No time to waste, Andrew! Study and Practice and Perform like never before! We all want you to succeed!
PS: Check back at www.PDXFirefly.com for more about Andrew. Scroll down a little ways for two other posts about this remarkablely likeable phenomenon that is Andrew De Leon!
July 1, 2012
The CA-125 is the tumor marker test for Ovarian Cancer. Portland Firefly has Primary Peritoneal Carcinoma, the aggressive, deadly sister to Ovarian Cancer.
Firefly has been doing great and her spirits are high. I still feel good, have very few symptoms, have some energy, my color is pretty good (not ashen grey). My hair has grown back to below my ears! My dark blond locks are now a stunning grey which my family and friends refuse to allow me to color! The problem is that this cancer continues to grow ~ yes, even while I have been on chemo these last 5 months.
But… do not be dismayed by this news; Firefly is not dismayed and shall explain the reasons to you now.
A normal CA-125 is 35 or below (0 -35). Firefly’s CA-125 in March, 2009 (three and a half years ago) before my first chemo was 3000. Currently my last result was the highest it has ever been 4854. Again, be not dismayed. Read on….
8/26/11 CA-125 was 19
11/28/11 jump to 668 Chemo/ Carboplatin
12/29/11 down some to 263 Chemo/ Carboplatin
1/26/12 142 Chemo/ Doxil
2/23/12 up again to 529 Chemo/ Doxil
3/27/12 422 Chemo/ Doxil
4/27/12 430 Chemo/ Doxil
5/28/12 skyrocket to 1153 Doctor ill til September; no chemo
6/11/12 tripled again to 3231 New Doctor, new chemo Gemzar
6/28/12 up again 4854 Chemo next week
Some of those numbers look scary but Portland Firefly is not disheartened. (Remember, I look good and feel good). Now I’ll explain while you look at the numbers above.
The CA-125 has been a VERY GOOD indicator for Firefly in the past. Doxil ( a drug that I was on last summer and again January through May of 2012) can change that indicator to being less reliable.
The 2/23/12 jump (from 142 to 529) was very disconcerting for Firefly, because it went up while on chemo, something that I had never experienced before.
Then the rise on 5/28/12 to 1153 indicated the Doxil was not working anymore and it was time to change Chemo drugs as the cancer had obviously changed. My Doctor became ill at this point and I had to wait almost two weeks to see another Doctor and schedule my next chemo.
We drew another CA-125 just before the chemo poison started flowing into Firefly’s Warrior Body on 6/12/12 with the result of 3231. This Cancer wants to devour my body!
Now, three weeks later, after the chemo Gemzar, Firefly’s Ca-125 has reached an all-time high of 4854!!!!! But wait, that is good news! Good news??? Yes, good news. This WAS an increase, but only a slight increase… not a double or triple as it had been in the past few months. And that means that the Gemzar is slowing the growth of the cancer! See? Good News!
So we will continue to pray that the chemo continues to work magnificently because I want, no, I need to have at least another 3 years. I want my precious Grandbabies to know me well enough to hopefully remember me. I never told anyone this before, (not even their parents) but they both have my eyes…
June 30, 2012
Firefly had a doctor’s appointment on Thursday. My CA-125 continues to rise…. I’ll give specifics in a future post.
The main thing to remember is that the CA-125 is a number, it is ONLY a number. I keep reminding myself of that! What is more important is how I feel. And I feel fine, have good energy, and people tell me I look good.
So there you are!!!!
Please keep praying that the chemo starts working.
June 18, 2012
Here is a link to some cancer cell growth information from YouTube.