August 31, 2010
Last Wednesday, I had my Doctor’s appointment. It was six months since my last Chemotherapy on February 22, 2010. This six-month appointment was important for several reasons.
If my CA-125 levels remain stable than that means that if I ever need to have Chemo again, then I will be able to have the same drugs that I had before (Carbo/ Taxol). It means that my cancer is what is termed ‘platinum sensitive’. That simply means that my cancer does not like platinum and that the platinum kills the cancer. It is a good thing to be ‘platinum sensitive’.
My cancer ~ Primary Peritoneal Carcinoma~ has an extremely high rate of reoccurrence.
In spite of what my beloved children want me to believe ~ the reality of this type of cancer is that it almost always returns. It is then treated as you would treat a chronic disease. And that means that I would have chemotherapy off and on over the years.
On Thursday, I found out that my CA 125 level has started to inch back up. It has been vacillating between 12 and 14 for about 6 months. Then last month, just before I left for Paris, it was 14 (when it should have been 12). Last week, my CA 125 level was 18. That is an increase of 4 points in one month and something to be watched over the next few months.
Actually I was not surprised in the rise in the CA 125 level because I have been much more tired than I felt I should be. And prior to my initial diagnosis fatigue was a powerful symptom for me.
Now what does all this mean? It means that I shall continue my life as I have been doing the last several months. I’ll have my CA125 level checked again in 2 months. We will, however, keep a watchful eye on those CA 125 levels and if they rise dramatically, I’ll go back on Chemo.
Guess I’d better enjoy my cute curly hair while I have it!!!
August 30, 2010
Last week, I found out that my girlfriend Chris who also has Primary Peritoneal Carcinoma, is now receiving hospice care at home. She has had a lot of cancer-related problems over the last few months and even though I was not surprised to hear this news, it was still a shocking realization to me.
She and her husband, Steve are Catholic and have many friends who are priests, one of whom we went to school with. They have all been over to pray for and bless her.
She has removed herself from all tube feedings and is not wanting to see any visitors; so she is withdrawing from this world in preparation for her meeting with Jesus.
I wrote a post about her on July 21, 2010 as she has been an enormous encourager to me in my battle with Primary Peritoneal Carcinoma.
This is such emotional news for Portland Firefly to digest. I plan to attend her funeral service, whenever it will be.
August 28, 2010
When I boarded the little American Eagle regional jet in Springfield, Missouri, I took my assigned aisle seat behind the bulkhead wondering if I’d have the ‘entire row’ (two tiny seats) to myself or if the flight was full.
The flight was not full and just as the Flight Attendant was beginning the required FAA Safety announcements, a man came up from behind me and asked if the seat next to me was taken. But this was just not any man… oh no!!! He was absolutely gorgeous! Tall, muscular, and with an engaging smile. And he was wanting to sit next to me! Of course the seat was available!
His name is Kevin and he told me a lot about himself on our flight to Dallas. He owns a ranch outside of Springfield and has his own airplane and a lot of other ‘toys’ all made possible by his lucrative job working on a deep-water oil rig in the Gulf of Mexico.
Yes, the Deepwater Horizion Gulf oil disaster had just happened a few days earlier. When we were on our flight to Dallas he was being called into work for a special training session. He explained so much to me about how the deep water oil rigs work especially his job in keeping the rig level and stable and in position. All this is aided by computers of course and this handsome man was an expert in his position.
The oil rig workers endure many hardships while on the water-borne rigs but they are well compensated for the time they spend away from their family and homes. Yet this handsome man was sacrificing a family for this job. I think he planned to eventually settle down, but it is difficult to give up the lucrative benefits of such a job.
Any way we spent a most pleasant flight and he warmed my heart with his smile and conversation. I wish him safety and love….
August 27, 2010
This Friday, Saturday, Sunday and Monday you will have the opportunity to see two ISS flyovers each night! NASA publishes the times of the ‘sightings’ and you can be sure that they are accurate — it is NASA after all!
One point to remember is that the ISS path takes it generally from west to east, but it may show up in the sky from South West to North West or anywhere in between. Its path is then toward the East. The longer the flyover time, the higher the ISS is in your sky. On Friday and Saturday nights, there will be a 4 minute visibility so Portland Firefly strongly urges you to look at that time because you will have a better chance to see it if you have never seen it before. That will make your future sightings easier! Have fun!!!!
Go to this NASA link to map out your plan for watching: http://spaceflight1.nasa.gov/realdata/sightings/cities/view.cgi?country=United_States®ion=Oregon&city=Portland
For those of you in a different region of the United States, you can go to the same web link just input your nearest large city! Your sighting times will, of course, be very different from ours here in Portland!
August 26, 2010
Hello! I’m back at the computer today… and I have so much to tell you that I do not think that I’ll really be able to get you caught up in the next month!
I’ll try to give you a little synopsis of what has been going on.
This summer, Portland Firefly took not one, not two, but three trips and when you add the little trip to Branson in April that makes four trips in about four months. No wonder I am tired!
My doctor did say that when I went off of Chemo the end of February that this next year could possibly be my best year ~ so I took that to heart and scheduled several trips.
The first one to schedule was my annual Harmonica Convention which was actually the last trip I took in August.
Then my girlfriends were going to spend a week in Paris and knowing that I wanted to go there ‘again’, they invited me along. At first I refused because they were going to be in Paris the end of July and the beginning of August ~ the very hottest time of year ~ and the height of the tourist season (I hate tourists) and also the time of full passenger flights (I travel on standby). But as the summer approached, I changed my mind and decided to go with them in spite of all the negatives. And I am glad that I did because I had a fabulous time!
Then, after I had scheduled these two trips (and fairly close together because the dates were dictated by others), Portland Firefly received notice that there was an annual Ovarian Cancer Convention in Washington, DC. I was granted a scholarship to pay for part of my convention expenses and so I went to that one as well!
Three big trips in a six-week span. That might be enough to wear anyone out! But there are lots of stories to tell and hopefully I’ll be able to share some of them with you. And pictures!!! I took 600 pictures on my Paris trip so I’ll be sharing a few of them with you.
August 20, 2010
As I posted yesterday, I am taking a little break from writing. But… just as soon as I wrote those words, ideas started coming into my head…..
I thought that I would explain further (what I think is ) the real reason for my little break. It seems that there is so much going on inside my heart that I need time to sort things out. Yes, I think that is it…. I just need time to sort some of these emotions out in my heart and my brain.
I have been reading books about Ovarian Cancer as a sort of research for my book that I am writing. It seems that there is really not very many (what I consider) good books out there on this topic.
Most are personal stories about how the woman went to the doctor, had this test done with these results, then had Chemo, then got better, then got worse, describes all of the complications, then got better, then got worse, then eventually died. I found them boring. I didn’t even like Gilda Radner’s New York Times Best Seller book.
I do not want my book to be like any of those; and it will not. Those books were all about what happened to that person physically, not about the disease. I want my book to be a book of substance, helpful and uplifting and not about me, me, me. Yes, my book will have very personal moments, moments of insight and understanding that will hopefully lead the reader on a little journey.
And then I found one book that follows the stories of Ovarian Cancer patients (in the same support group I attend), but is written by someone who does not have Ovarian Cancer. I have found this book to be interesting as well as very powerful and well-written.
I know some of the women that she is writing about and this book makes me cry. It stirs up emotions that are deep in my being; it stirs up that choking ache deep inside the center of my chest….
You know the ache… the one that when you have it, you think you are having indigestion or a heart attack. I hope you know this ache; not because I want you to hurt, but because this deep ache, this deep wellspring of emotion shows that our emotions are still working. And that means that we are alive!
This book is also thought-provoking and Portland Firefly’s Chemo brain needs time to digest all that she has been reading. The assimilation process just takes time…. Time that is needed for those thoughts to roll around in my brain while I do other things. Time for my emotions to soften from the stoicism that has been there these last 18 months. Time to gather my thoughts about my life and where it is going; a big change from the ‘high-powered survival mode” that I have been in since March 2009.
Yes, Portland Firefly is alive! A year and a half ago, we were not sure that I’d be alive today. And not only am I alive, I am feeling good and gaining energy weekly. I need time to process this….
And so…. I’ll resume writing in a week or so and I promise you… you will love what is coming up…..
With Love to my readers…. Portland Firefly
August 18, 2010
The Oregon Air Show is this Friday, Saturday and Sunday at the Hillsboro Airport. For those who live in the area, please be aware that there will be increased traffic and some roads will be closed during certain aerial performances.
Some of the performers are the Marine Corps Harrier Jets, the US Patriots Team, F/A 18 Hornets, Sons of Legends, and many more.
This is one of the best events around our fair city and the weather should be perfect for a day ‘looking up to the sky’.
For more information click on the following link: http://www.oregonairshow.com/
August 16, 2010
Portland Firefly has decided to take a little break from writing for a few days…..
It has been really hot here in Portland and it just isn’t any fun to sit at the computer when it is so hot outside. That doesn’t make any sense at all, not even to me, but that is the way I feel right now.
August 13, 2010
This is the time of year for the most famous and most reliable of all meteor showers. The Perseids. They are visible from almost every part of the United States and tonight is the night of maximum ‘events’ to watch. Look to the North East sky.
When Portland Firefly was a child, every year during the ‘dark of the moon’ in the month of August, we would take our Family vacations camping in the great outdoors of the beautiful Sierra Nevada Mountains. We had a very special campground that we would retreat to and there were several wonderful cold water trout filled lakes nearby. I loved these vacations in the fresh high altitude outdoors surrounded by the beauty of God’s nature.
And it was usually when were sitting around the campfire roasting marshmallows or on the dark nighttime drive through the desert that my little child’s eyes would look for all of the ‘shooting stars’ in the darkness of the milky-way night sky. I was never disappointed.
This meteor shower gets the name “Perseids” because it appears to radiate from the constellation Perseus. An observer in the Northern Hemisphere can start seeing Perseid meteors as early as July 23, when one meteor every hour or so could be visible. During the next three weeks, there is a slow build-up. It is possible to spot five Perseids per hour at the beginning of August and perhaps 15 per hour by August 10. The Perseids rapidly increase to a peak of 50-80 meteors per hour by the night of August 12/13 and then rapidly decline to about 10 per hour by August 15. The last night meteors are likely to be seen from this meteor shower is August 22, when an observer might see a Perseid every hour or so.
And so this childhood ritual continues with tonight being the night of greatest ‘shooting stars’.
Be sure to make a wish!!!!
August 12, 2010
How big are wine bottles?
“Wine is Bottled Poetry” – Robert Louis Stevenson
The capacity of a wine bottle in Liters is followed by the number of standard size bottles contained:
Standard Wine Bottle holds .75 litres of wine. One bottle of wine.
A Magnum Wine Bottle holds 1.5 litres of wine. Two bottles of wine.
A Jeroboam Wine Bottle holds 3 litres of wine. Four bottles of wine.
A Rehoboam Wine Bottle holds 4.5 litres of wine. Six bottles of wine.
A Methuselah Wine Bottle holds 6 litres of wine. Eight bottles of wine.
A Salmanazar Wine Bottle holds 9 litres of wine. Twelve bottles of wine.
A Balthazar Wine Bottle holds 12 litres of wine. Sixteen bottles of wine.
A Nebuchadnezzar Wine Bottle holds 15 litres of wine. Twenty bottles of wine.
“Wine comes in at the mouth
And love comes in at the eye;
That’s all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh.”
August 10, 2010
Well, I have always had an affinity for finding just the right thing when I go shopping and today was no exception. Only today (as I have done on other occasions), I told God what I needed to find before I went into the store.
Well, how amazing! Or, maybe not! I was able to find exactly what I was looking for and on sale, too! On top of that during my eight stops today, I found a parking place in the shade of a tree seven times. My black car really liked that and so did I when I climbed back into it after completing that errand! Oh, the eighth time I found a spot right in front of the door to the store in a parking lot that had no shade!
August 9, 2010
Today, August 9th is my Mother’s birthday.
She passed away several years ago and whenever I see this date, I can’t help but to think of her. She was a vibrant, intelligent woman who lived life and enjoyed herself. There are times when I really miss her, but I think that as the years have passed by, I have resigned myself to her absence. But there are times, usually when my son and grandson are doing something really cute, that I wish she could be here to see that. She would be so proud of both of my children and I know that she was… They loved her so….
August 7, 2010
My hair has been slowly growing over the last 5 months and today was the first day that I actually ventured out in public without a scarf or a wig to cover my head. So this is a milestone day for me.
Because my hair grows so slowly, it has taken five months for my hair to grow long enough for me to feel OK to go in public with it uncovered. I did babysit my grandson a few times over the last month without my turban on and I actually went out into my yard to water my plants several times (hoping that no one would see me).
But today was different. I had a lot of errands to do for an upcoming trip and I thought,”Well, why not?”! So I did. In my excitement to ‘bare what little hair I have’, I shared this milestone day with several people whom I met while out and about today. Their remarks encouraged me to feel much more comfortable. We will see how tomorrow goes.
By the way, it took me forever to ‘fix’ my hair. Now remember that there is almost no hair there, and I can’t believe that I spent so much time ‘fixing’ what little hair I have. I think I was gaining courage. For the last 16 months, I have not even looked at my hair in the mirror, but I sure checked every single angle of it today before going out. I needed to build up my confidence. I didn’t have to use hair spray because there isn’t enough hair to hold down!
This is just one more step on my recovery and it feels so good. This has given me so much hope….
And it has driven my spirits higher than they have been in 18 months…..
Who would have thought that a little bit of standing-straight-up dark grey curly hair would have been such an uplifting thing?
PS: My Pre-Chemo hair was very fine, very straight, and dark blond with a few (very few) grey hairs and was also highlighted. This Post-Chemo dark grey poodle-like hair that I have is a completely different ‘look’ for me and that is the reason for my not feeling completely confident with my new look. But don’t get me wrong, I am so grateful to God for my physical healing and for my new hair ~~ whatever He has chosen to give me, I will gladly take!!! But it is strange that my hair is shorter than my Son’s short hair style!
August 6, 2010
I know this is a strange title for a weblog post, but that is what this is about –travel size deodorants.
While getting ready for a recent trip, I looked in many different types of stores for a travel size of my favorite deodorant. Since it is a ‘all natural’ product, I even searched the pharmacy sections of my local health food stores . No Luck. Oh they carried the regular size, but the TSA allowable 1 quart bag per passenger is so tiny and I have so many things to put into it, that I needed the smaller travel size so I could fit everything into that TSA allowable bag.
In desperation, I called the product’s toll-free phone number. The customer service representative was very nice to me and informed me that stores rarely stock that travel size anymore. I groaned. She said that they do have a few in the warehouse and that she would be happy to send me one. I gave her my address and was about ready to get off the phone when I realized that it would not arrive in time for my trip. She then offered me what I consider to be the worlds greatest kept secret and a super travel hint.
She told me that I can ‘make my own’ travel size if I have an empty container to put it into. I told her that I did. This is what she told me to do.
Take what is left in the bottom of the deodorant container and microwave it for just a few seconds. I found that 5 seconds was enough. Be careful, It can be hot and spill easily! Then you just simply pour the now melted deodorant into the smaller travel size container. Let it set for a few minutes and you have now made your own travel size deodorant!
It was so cool, money saving, convenient and best of all, I get to use my favorite deodorant when I travel.
August 4, 2010
Now Portland Firefly has yet another reason to like Portland….
Week-end night-time repairs…
Yes, this city actually uses their brains in figuring out how to repair roads with the least disruption to the driving public. How? They schedule road repair and road maintainance for night times.. and usually on the weekends when there is less traffic. Then they make an exception… on Holiday weekends, they suspend road repairs and have all lanes open.
Just one more reason to love my new state!!
August 3, 2010
I have something that I want to share with you all. Whenever you see someone who is undergoing Chemotherapy and they are out shopping or at a movie or walking in the neighborhood, they are expending a huge amount of energy just to show up!
It takes me such a long time just to get dressed, put on my make up, wrap my head and drive somewhere that I feel as though I deserve an award for showing up! And it is quite possible that I do! Add to that the ‘charming’ chemo side-effect of ‘chemo-brain’ and it amazes me that I can remember anything at all –appointments, driving directions and names. A new phrase I’ve employed often recently is,”Now, please remind me of your name.” This is said, of course, with a sweet (“I’m really a ditz”) smile. Remember, just ditzy, not crazy.
I hope this gives you a new appreciation of those with cancer that you see ‘out and about’.
Oh, and if you extend a special courtesy to one of us, we really do notice and appreciate it –even if we fail to acknowledge it at the time… It one of those moments you realize later when you are at rest and your chemo-fogged mind is reviewing the days activities and you realize that some stranger showed you loving concern in a way you didn’t realize at the time and never thanked them for it. So you thank them then and ask a special blessing for them during their day.
August 1, 2010
Portland Firefly finally arrived at the Portland Airport after spending two days in the Dallas terminal trying to get on a flight home. Since my travel was standby, I had not arranged for a ride to pick me up and bring me home, so I decided to take the Max.
I love the Max; Portland has a terrific public transport system and I always enjoy watching the humanity on the train. This trip was no exception.
Leaving the airport, I visited with a businessman who is an expert on tumor marker blood tests. I had just come from a conference where we had a session devoted to this topic. What are the odds of that! After he got off at his stop, I just enjoyed the ride for a few minutes until the train stopped for the passengers at the Zoo.
In the dark tunnel that is the Max’s Zoo stop, onto the train bounded Ezra. He was so full energy and so talkative that I was a little concerned. But he was a very likeable young man, 20 something , with a wild, messy ponytail of dark soft almost curls sort of sticking out everywhere. He started talking to me — telling me how he was taking the train to Wilsonville where he planned to hitch-hike to Bend to gather his belongings. As his story goes… his friends took all of his stuff to Bend and refused to bring it back to him. All of his clothes, his (probably meager) possessions, including his wallet with his ID in it were in Bend. This talkative, small in stature, compact bundle of energy told me that he had quit smoking two months ago and he was very proud of this accomplishment. He went on to comment that he didn’t realize just how improved his health was until he had to run several blocks to catch this train, yet he was not the least bit winded. I complemented him on it as well.
He had all of his things in a ripped plastic bag that he had set on the seat between us. I couldn’t help but to notice it and I wondered if the tattered plastic bag would make the trip without spilling its contents all over somewhere.
We continued to visit about things that mattered to us. He asked about my cancer and told me that he knew of two young women who had a type of gynecological cancer. He then added that he would never consider marrying either one of them. A family was too important to him. It mattered not that they might be beautiful, employed, and wonderful in every other way; he would not consider them. He then went on to tell me all about his name ~ a biblical one ~ and about his parents, both his adoptive as well as his biological ones. I was shocked at his piercing comments to a stranger regarding such personal matters, but he probably figured that he’d never see me again and he is probably right. This openness only added to his likability and charm.
Earlier that morning in Dallas I had packed a plastic bag into the side zipper of my carry-on suitcase. “One never knows when one might need an extra sturdy plastic bag,” I told myself. Well, I was almost home and I knew that I would not be needing that bag. I reached into my carry-on bag and withdrew the untattered, untorn piece of recyclable material and offered it to this interesting young man. He was happy to have it because it did look as though his ‘suitcase’ might not make the trip all the way to Bend.
We parted at the next stop wishing each other well.