September 8, 2010
I Cheat at Solitaire
I like to play some card games on the computer and I have gotten pretty good at some of them…. but I have also figured out how to ‘manipulate the cards’ if needed so that I can win. Some may call that cheating. I personally don’t care what you call it… I do it and I win. So there!
But in the ‘game’ of life… (aha… here comes Introspective Firefly), especially when it comes to fighting Cancer … there is no cheating or ‘manipulating the cards’ . We must play the hand that we are delt. Some play it poorly, some play it vigorously, some play it slyly, some play it with elegance and grace.
Hopefully I am playing it with elegance and grace.
I am now in the ‘big time tournament’.
September 2, 2010
September is Ovarian Cancer Awareness Month
September is Ovarian Cancer Awareness Month….. Need I say more??
Probably not, but here goes anyway…..
Teal is the color for Ovarian Cancer –so Portland Firefly has been wearing a lot of teal lately. I make sure to wear it whenever I give my speech.
Here are the symptoms again…
• Ovarian cancer, sometimes called “the silent killer,” is not silent. Symptoms such as bloating, pelvic or abdominal pain, feeling of fullness or urinary issues, can be subtle but are usually present early.
• When symptoms like bloating, abdominal pain, feeling of fullness, or urinary problems are caused by ovarian cancer, they tend to be persistent, and a change from normal.
The symptoms of Ovarian Cancer will be a change from how you feel normally and will continue over a period of two weeks or more. Some other symptoms may be extreme fatigue, constipation or diarrhea, a feeling of nausea, increase in waist size, back or leg pain, reflux type symptoms. Many women are mis-diagnosed with irritable-bowel syndrome which causes a detrimental delay in treatment.
Most women know that they are sick in a way they have never been sick before. Do not wait. See your gynecologist immediately and ask for a pelvic and rectal exam, a transvaginal ultrasound, and a CA-125 blood test. Some doctors may also order a CT Scan which may show the presence of ascites or fluid in the abdomen.
August 31, 2010
Six Month Check-up
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
Chris II
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 26, 2010
Back to Writing
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
Writer’s Break II
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 16, 2010
Writer’s Break
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 7, 2010
No Scarf Today
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 3, 2010
Kindness of Strangers
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.
July 30, 2010
QVC Super Saturday Live Designer Sale
Super Saturday Live is this Saturday, July 31, 2010 from 11:00am – 1:00pm West Coast time.
QVC presents Super Saturday Live, a nationally televised sales event featuring designer products in support of the Ovarian Cancer Research Fund (OCRF). The net proceeds from this event will be donated to OCRF to advance ovarian cancer research, raise awareness of the disease, and eventually find a cure.
Designer Sponsors
In support of the fight against ovarian cancer, QVC has invited top brand names and companies to donate high-quality accessories, beauty, jewelry, and home goods at wholesale cost. This merchandise will be sold during the Super Saturday Live event both on QVC’s broadcast and QVC.com with all net proceeds benefiting OCRF. Check out the brands that have partnered with QVC and OCRF this year to make this event a success:
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| Amrita Singh | Bare Escentuals | Dalton Cosmetics | DHC |
| Dr. Denese Skinscience® | Dr. Michelle Copeland Skin Care | Honora | It Figures!® |
| Joan Rivers Classics Collection® | Judith Ripka | Laura Geller | Lierac Paris Skincare |
| Lucky Brand | Mally Beauty | NARS | Perricone MD |
| philosophy | Slatkin & Co. | Supersmile | Smashbox Cosmetics |
| Talbots | tarte: high performance naturals™ | Votre Vu | WEN by Chaz Dean |
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| Jacqueline Kennedy Collection | Juicy Couture | kate spade new york | LORAC |
| Poppy King’s Lipstick Queen | Rivka Friedman Jewelry Collection | Theory |  |
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This is just a partial list, for more information, go to : http://www.qvc.com/cgen/render.aspx?qp=promo|supersaturday_2010&rewrite=no#
July 24, 2010
Shop QVC for Ovarian Cancer Research
Saturday, July 31, 2010 QVC will be having a special event to benefit Ovarian Cancer Research from 2 to 4:00 pm Eastern time. That would be from 11:00 am to 1:00pm Pacific Daylight Time on the West Coast. It is called Super Saturday Live and they actually have some designer items on sale online now.
I was told that the show items are very nice, high quality and that they are below retail prices so they sell out very fast. This sounds like you should not miss this opportunity to pick up a few goodies (early Christmas shopping perhaps) and benefit Ovarian Cancer research in the process.
Some items are already available onlline at:
http://www.qvc.com/cgen/render.aspx?qp=promo|supersaturday_2010&rewrite=no
July 22, 2010
Ovarian Cancer Facts
Who Is at Risk:
• A woman’s lifetime risk of developing ovarian cancer is 1 in 71, with most cases developing post-menopause.
• Women with close family members — sisters, mothers, aunts, grandmothers — who have had ovarian cancer are at higher risk for developing the disease.
• Women of Eastern European (Ashkenazi) Jewish descent, or women who have the BRCA1 or BRCA2 gene mutation, are at higher risk for ovarian cancer.
• Women who have had breast, colon, or endometrial cancer have an increased risk of developing ovarian cancer.
Symptoms:
• Ovarian cancer, sometimes called “the silent killer,” is not silent. Symptoms such as bloating, pelvic or abdominal pain, feeling of fullness or urinary issues, can be subtle but are usually present early.
• When symptoms like bloating, abdominal pain, feeling of fullness, or urinary problems are caused by ovarian cancer, they tend to be persistent, and a change from normal.
The symptoms of Ovarian Cancer will be a change from how you feel normally and will continue over a period of two weeks or more. Some other symptoms may be extreme fatigue, constipation or diarrhea, a feeling of nausea, increase in waist size, back or leg pain, reflux type symptoms. Many women are mis-diagnosed with irritable-bowel syndrome which causes a detrimental delay in treatment.
Most women know that they are sick in a way they have never been sick before. Do not wait. See your gynecologist immediately and ask for a pelvic and rectal exam, a transvaginal ultrasound, and a CA-125 blood test.
Prevention:
• Using oral contraceptives, especially over the course of five consecutive years, lowers the risk of ovarian cancer.
• A woman’s risk of developing ovarian cancer lowers with every pregnancy.
• Know your family history. Ovarian cancer in the family means an increased risk of ovarian cancer for yourself.
Basic Statistics:
• Approximately 22,000 women in the United States will be diagnosed with ovarian cancer this year.
• Among women in the United States, ovarian cancer is the eighth most common cancer and the fifth leading cause of cancer deaths.
• Currently, there is no reliable method of early detection for ovarian cancer. The mission of the Ovarian Cancer Research Fund is to find one.
About the Ovarian Cancer Research Fund:
• Since 1998, the Ovarian Cancer Research Fund has given over $33 million toward ovarian cancer research.
• The Ovarian Cancer Research Fund’s Scientific Advisory Committee, comprised of the nation’s top ovarian cancer experts, distributes funding yearly to the most promising up-and-coming researchers in the field.
• Ovarian Cancer Research Fund is the largest private organization in the United States dedicated exclusively to finding a method of early detection, and ultimately a cure, for ovarian cancer.
July 21, 2010
Chris
This post is about one of my heros who deserves to be recognized publically. It is my friend Chris who lives in Southern California and was also diagnosed with Primary Peritoneal Carcinoma.
Why is she one of my Heros? I’m really glad that you asked.
Shortly after I was diagnosed I did some online research on Primary Peritoneal Carcinoma. One of the statistics out there says that the average life expectancy is 25 months. I believe it because I personally know of 4 women who died just a few months after diagnosis. I was not only very sick, but cognizant of the fact that my life was now being cut shorter than I would like. Since I knew that I was very sick and I knew that averages are made up of the short-term survivors and the long-term survivors, I didn’t have a clue as to where I might fall in that ‘average’.
Then I found out about Chris. She is the wife of one of my high school friends and she had been diagnosed 14 months prior to my being diagnosed. Wow! 14 months….. I cannot begin to tell her how much her survival time encouraged me! I thought, “If she can live for 14 months with this, then so can I.” And now I am 16 months from my diagnosis. I am feeling well, gaining new strength weekly, living my life, enjoying it and my beautiful friends and family.
Chris has had a more difficult time with this horrible disease than I have. Initially, she was misdiagnosed, which is not un-common with this cancer. The 4-6 months delay in her obtaining a correct diagnosis allowed her tumor to continue growing.
She was so helpful to me when we spoke after my diagnosis. She told me many helpful things of what I could expect to happen and what to do about them. This was invaluable to me as I was struggling through this maze of Ovarian Cancer alone and her availability ~ just on the other end of the phone~ gave me the great comfort that I truly was not alone in this battle.
She is now 30 months post diagnosis and most of that time she has been on chemotherapy. Yes, 30 months on life-saving poison with all of the accompanying side-effects. Yet, during that time, she continued to work as a hospital nurse and she found the strength to travel to Lourdes, France with her family. When Portland Firefly took a trip to Southern California, Chris, even though she was not feeling well, made an enormous effort to come and meet me. Thank you for that, Chris. She regularly continues to take family trips ’to the river’, even if she isn’t feeling at all well. This beautiful woman has had hospitalizations, surgeries, and more chemotherapy; yet she perseveres and continues to be a vibrant, vital force to her loving family.
Recently, she has had so many medical complications that she had to quit work. Quit work! I couldn’t even get out of the recliner on most days. How did she find the strength to get up, get dressed and go to the Hospital. Yes, they did give her a ‘desk job’ but, my goodness! She was working full-time up until recently.
I doubt if she has any idea of the positive effect that she has had on my life and how much she is in my prayers. Chris, you are truly one of my heros and I love you, my Cancer Sister. Thank you for the encourager you have been to me and to those that know your warrior spirit in this battle. God Bless you, Sweetie, and keep fighting. There are lots of people who love and care about you.
July 9, 2010
Hair Length
It has now been 4 months since Portland Firefly went off Chemo. I’m doing well and my CA 125 numbers are relatively stable. My eyebrows and eyelashes have grown back. YEA!!! And my hair is making a slow comeback.
It is the longest at the nape of my neck and it sometimes peeks out from under my head scarves so it looks like my hair is longer than it really is. Last week I saw a documentary on PBS about a woman who gave up everything and became a Buddhist nun. Her shaved hair is longer than mine.
And so, when people ask me I tell them that my hair is shorter than a Buddhist nun’s hair!
July 7, 2010
A Tea Party
Portland Firefly has found an easy fun way to entertain that does not wear her out too much. I have started having tea parties at my home.
Tea Table by PDXfirefly
I start out by deciding who I want to attend; and it is usually a very small group — usually two or three others in addition to myself. I make sure that the people attending are compatible in some way. This does not mean that they have to know each other — just invite people who you like that you think would get along with each other and may have a common interest.
I have a beautiful dining room – very light and airy – with comfortable chairs so I set my dining room table and that is where we have our tea party. Mine is a little more formal than you need to have it; but that is how I like to entertain ~ comfortably elegant. I have a lot of pretty items and it is fun to get them out and use them; they aren’t doing anyone any good sitting in the drawer or cabinet!
Because of my limited energy levels, I plan my menu several days in advance and I write it down. I also assemble my serving pieces and get out the dishes and silver that I plan to use. I clean the house several days ahead of time, so all I have to do the night before is to freshen up the place. Besides we will be doing so much talking that no one will notice a little dust or disorder. And, if they do, well…. they don’t have to come back again!!! The big advantage of preparing the house ahead of time is that I have more days to enjoy a clean house! And for someone with cancer ~ cleaning the house is a big deal, believe me.
Now what to serve…. I usually serve only one type of tea which I make in the kitchen in my best tea-pot which I then bring to the table and set it on a plate lined with a doily to catch any drips. The tea that I serve is called Good Earth – caffeine free original. It has a naturally mild sweet and spicy taste and I have yet to find someone who does not like it.
I have a tiered serving dish that was a gift a long time ago. It is perfect for putting tea goodies on. I usually serve home roasted nuts, fresh berries, dried apricots, dates or hibiscus flowers, a wrapped cheese, fresh made (just an hour ago) scones, chocolate truffles, a vanilla cream filled creation, cucumber sandwiches, and maybe a special small cookie such as a meringue. Use your imagination ~ you want to have a variety of textures and colors on you serving tray ~ and make the items small sizes and easy to eat with your fingers.
To accompany the scones, I serve Raspberry Jam, Lemon Curd and butter in separate dishes with their own tiny serving spoons. If these items are dished out and refrigerated an hour (or more) before your guests arrive, you can set them on the table as you answer the doorbell and they will still be cold at tea time. You can have your tiered tray of goodies on the table as well or on a nearby table or just around the corner on the kitchen counter. It should be close enough so that it will be easy to grab it and set it on the table as your guests seat themselves. Always reserve the seat closest to the kitchen for yourself!
As my guests arrive I have them sit in the living room and when everyone has arrived, we go to the tea-table. At that time , I’ll bring in the warm scones and the tea. I actually have the water all hot well before my guests are scheduled to arrive. It will stay hot on the stove (with a lid on it) on low temp once it is brought to a boil. I also ‘scald’ my tea-pot. That means that you put very hot water into the pot to warm it up before you actually add the tea bags and hot water for tea. It helps to keep your tea hot longer. You can actually make your tea in the kitchen when your first guest arrives (hopefully your remaining guests will be there soon). That way, you can all spend more time at the table visiting and enjoying the tea goodies and each others company.
Because, the whole idea of a tea party is to visit and create time together with your friends.
Now, this may sound like a lot of work to some of you out there. But remember, you are doing all of the prep work ahead of time so that you will be refreshed and able to enjoy the time with your friends. I also like to have several tea parties planned near each other. Maybe one on Tuesday at 11:00 am and another one on Thursday at 2:00 pm with different friends. I already have the food and everything is out and ready to use, so it is pretty easy to do it twice.
July 5, 2010
Dr.Oz and Olive Oil
Well, Dr. Oz did it again! He (his staff) came up with some unusual uses for olive oil. None of them really surprised me.
He emphasized that drinking olive oil will help reduce bad cholesterol and showed this with one of his ‘science experiements’. Then he had one of his guests shave her legs with olive oil. She liked it as it also moisturizes your legs. Then he had her pour olive oil on her long dark tresses; massage it in and cover with an old shower cap for 15 minutes. You then wash your hair.
I wonder if her husband thought that she was a salad!
July 3, 2010
A Good Wishes Gift
Portland Firefly was just made aware of a business that sells accessories for women’s hair. This business owner now makes pre-tied head scarves available for chemotherapy patients who have lost their hair.
So I called their toll-free phone number after I viewed their offerings online. They asked me to give them three choices on fabric styles and that they would be mailing a headscarf to me within 3 weeks. I am pretty excited about this offer as I have been wearing scarves for 17 months now. I love the scarves I have, but it is always fun to get a new something for the wardrobe!!!
June 29, 2010
Follow-up Doctors Visit
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 16, 2010
Eyelashes
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
Angiogenesis ~~ what?
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 7, 2010
Why I Stopped Chemo
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
Energy Level
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.
May 29, 2010
I’m Depressed
I know … it’s Memorial Day weekend and I should be happy and sunny … but I’m not. I’m depressed.
It has been raining here for the last two months!!! And I was ill for the last five weeks with that icky cold, cough, throat virus thingy. And on Monday, I woke up with a terrible kink in my back. The chiropractor says it is a triple case of facets syndrome and very difficult to break up. So.. I have been hurting on top of everything else! And… I have no energy. If I go out and do an errand, then I come home and just want to sit in the recliner. I try to go out for a walk in the rain, but that isn’t much fun because it is also cold. I used to like walking in the rain — when I lived in Southern California!
I know that this post sounds like “poor me” but that is the way I feel right now; so there!
I think I’ll go and dig out my ‘light box’ and sit in front of it for an hour or so. Maybe that will help. But don’t worry about Portland Firefly because she will come out of this eventually and will be just fine.
May 24, 2010
On The Mend
As I mentioned in an earlier post, I had a terrible cold; but this was not just any cold… Oh, no, it was that viral upper respiratory ick that has been going around. I thought that I’d snap right back in a week or so… two weeks later I realized that I was going to be out for another week. Well, today I am beginning the fifth week of fighting this virus. It has just knocked me out and my energy level is still at almost zero.
My fever went all the way up to 102 degrees and my doctor ordered a chest x-ray to make sure that this infection wasn’t going into pnemonia in my lungs. I’m still fighting the infection.
I would do something – run errands, make plans for a meeting, etc. and then I’d sleep for 9- 10 hours and then need a two-hour nap on top of that! I was so looking forward to having my energy level get back to near normal after a year on Chemo, but it was not to be! My energy levels were so low that Portland Firefly didn’t even feel like writing !!!! Let’s see how I do this week as I have lots to tell you about!!!
May 12, 2010
I Sick; I Hab a Code
Portland Firefly hasn’t written much this last week because I have been ill with a cold. Not just any cold…. the worst cold that I can remember having.
It started out with just a slight cough and slight malaise but rapidly progressed into a horrible cough. I would cough for almost an hour at a time. And you know how coughing wears one out! So now I was also very tired most of the time! Darn! And just when I thought I should be gaining some of my energy back, too!
Well, that wasn’t bad enough…. no, I also had a slight sore throat. Then I was so sick I couldn’t remember if the old adage said to ‘starve a fever, feed a cold’ or ‘feed a fever, starve a cold’. It didn’t matter… I didn’t feel like eating anyway, so I made myself a huge pot of Chicken soup.
Then the high fever started. It was really scary for me to have the thermometer in my mouth and be able to watch the indicator rapidly go up to indicate my high fever… made it all the way up to 102 degrees. I don’t ever remember having that high of a fever and I was scared. So, of course I called my doctors. I was told that I have a virus and that I just have to ‘treat the symptoms and ride it out.” I was advised to drink lots of liquids, and to watch my electrolytes. Then I remembered that I had some Pedialyte that I had not opened, so I drank some of that. It made me feel better right away. Good to know about electrolytes and Pedialyte which is better than Gatorade in my opinion.
Well I suffered with that fever for over two days, then it broke in the middle of the night with a hard sweat. I awoke soaking wet and had to change my night-clothes, but I felt much better the next day and then my ‘low-grade fever’ of 99 degrees started in for three days. A girlfriend stopped by with Cinco de Mayo supplies — but I couldn’t touch the homemade tamales for several days. Then my neighbor brough over some fresh fruit which I needed desperately because I had virtually nothing fresh in my refrigerator.
It was a terrible way to lose a few pounds and I am still coughing, but not quite as much. I also still have to take a nap every day!!! I am not getting anything done! Hopefully it will all be gone before next weekend.
And that is why Portland Firefly has not written anything of substance for a few weeks!!!
