November 3, 2011
NED
The letters NED have significance regarding Ovarian Cancer.
If a patient is not cured (which I was not) then there is no such thing as remission for OC. The term that is used is NED ~ No Evidence of Disease.
I have never been NED since my diagnosis. But I did find a different definition of NED that does fit my situation.
NED ~ Not Eligible to Die!
So I will hold on to NED for as long as I can!
October 27, 2011
Blood Test Results
Well, I had my blood drawn again yesterday (in preparation for my Doctors appointment on Friday) and my CA 125 is again elevated. Two months ago, it was 19 (normal is 35 or below); last month it was 20 (1 point is no big deal); and this month it is at 99!
This came as no surprise to me as I have been feeling mildly symptomatic for the last several months. But… I also have been feeling very well and my energy level has been high. This has enabled me to start sorting through things which is something I have not had the energy to do for over 4 years.
Because quality of life is very important to me at this time, and the chemo will make me feel worse than the cancer makes me feel, I will forego chemo this month. Not to be concerned…. I will certainly resume chemo when I feel it will do me the best good. Besides, there is a drug shortage of many chemo drugs specifically, Doxil, the one that I was last receiving.
This rise in my CA 125 level will prompt me to have the ‘what are the possible scenarios regarding life expectancy’ conversation with my doctor again. I remember the somber tones and the difficulty that my Son had the first time he uttered the phrase “What does this mean in terms of life expectancy?” That was about 18 months ago and I remember seeing him swallow hard as he searched for just the right words to say. I have outlived the average life expectancy by 6 months so far and for me the end is not anywhere in sight. Not for at least a few more years if my great attitude has anything to do with it! Now for me, it is just another expected test result. We just have to decide what will be done next.
I am not worried about it, so PLEASE don’t you be worried about it.
October 11, 2011
Drug Shortage Continued
I am starting to become ‘symptomatic’ I’ll be having my blood work done in a few weeks at the end of October with my doctor’s appointment to follow. I called yesterday to make sure that I was on the ‘short list’ for my chemo drug, Doxil and today I was informed that there is no doxil. Who knows what drug my doctor will come up with to give me; I ‘m sure glad that she is the expert and not me!
October 4, 2011
Drug Shortage Petition
Some of you may know that there is a drug shortage for many cancer treatment drugs. Here is a petition if you want to sign it. After you sign on the petition, it will take you to a page where they ask for a donation. Just close out the window and your petition will be accepted without a donation. Thank you.
Drug Shortage Petition
Many women in treatment for ovarian cancer have been affected by the drug shortage.
In an effort to foster action, the Ovarian Cancer National Alliance has put together a petition.
Please click on the link below to view and sign the petition.
September 30, 2011
The General and The Warrior
I had my regular doctors visit the other day. Actually it was delayed by about a week because of an illness in my doctors family. No problem. I have been feeling well, so I went to the appointment in high spirits.
Since I am feeling well and my CA-125 only went up one point (from 19 to 20) we decided that I didn’t need to have chemo yet. We had a thorough and very good conversation as I wanted to touch on End of Life issues with her again.
Yes, we have had this conversation a few times over the course of my illness and it is always better to have this type of discussion when you are not in the middle of chemo brain and feeling sick. Usually one or both of my children are sitting in on the conversation, but today it was just the two of us. We have a strong respect for each other and acknowledge that we are a team in this fight. She ( I have a fabulous woman doctor) is the general and I am the warrior. The general directs the battle and the warrior does the fighting with the weapons available to her. However this warrior has the option to question and disagree with this general but I usually leave the decisions to her because I trust her with my life. Literally. And she knows that.
I am so lucky to have her for m y doctor!
September 18, 2011
Doxil Drug Shortage
The chemo drug that I have had most recently, Doxil, is in short supply. It has been unavailable at most cancer centers for the last three months. As you know, I had Level 4 (the worst) side effects with my third dose of Doxil and my doctor gave me a little chemo vaca while my body recovered from the Doxil. I am doing well, and feeling good and some of my energy has returned. This means that I am able to get a few things done that have been calling to me for the last three years!
Here is a link to a CBS News video about the Doxil shortage: http://www.cbsnews.com/video/watch/?id=7381127n
September 14, 2011
Arsenic in Apple Juice
Today, Dr. Oz’s show focused on the amount of arsenic in Apple juice. Yes, the poison ~Arsenic~ in the juice that we give to our little ones!
The results are astounding! Most of the juices are made from apple juice concentrate. And the majority of them use concentrate from CHINA, which has no controls over the amount of arsenic allowed in products. The concentrate is shipped to the US in big barrels and the US companies are mixing it up with water. After it is boxed up it is sold in our grocery stores and served to our children. It is not tested by the FDA to my knowledge.
Arsenic is a toxic poison. Extreme amounts can cause death. Smaller amounts can damage individual DNA, cause cancer, brain problems, and other things. Not what we want for our children!
Usually apple juice that is made from concentrat from the United States is safe. Be sure to do your homework regarding this issue…
10 parts of arsenic per billion parts is what is allowed by the USDA. Dr. Oz had several products tested from grocery stores all over the US. I know that you have had at least one of these and most probably so has your child!
Minute Maid 2 – 3 parts
Apple & Evie 3-11 parts
Motts 4-16 parts
Juicy Juice 2 – 22 parts
Gerber 6 – 36 parts
For more info go to: www.doctoroz.com
Permalink Comments off
September 2, 2011
TIE ONE ON Purchase Information
Hello Readers. My book, TIE ONE ON, A Head-Scarf Tying Guide for Chemotherapy Patients is now available. Currently I am in the process of have a dedicated web-site created that will have paypal capabillities. But for now you may order directly from me.
TIE ONE ON retails for $30.00 with shipping extra. BUT….if you order directly from me, your cost will be $25.00 with free shipping. This will include a personalized note as well as an author signed copy.
Send your check or MO for $25.00 to :
TEAL BOOKS
P.O. Box 5151
Aloha, OR 97006
Books will be mailed immediately, but plese allow two weeks for delivery.
If you order 10 or more books, they are $20.00 each ($200 for 10) with free shipping and also author signed.
Thank you for your orders.
September 1, 2011
WEAR TEAL DAY
Tomorrow, September 2, 2011 is WEAR TEAL DAY. This is a way to advance awareness of Ovarian Cancer, its signs and symptoms. So get out your teal, aqua, turquoise colored tops, capris, shoes, and wear them with purpose! Oh and paint your toe nails teal, too!!! You are gonna end up loving it!
August 18, 2011
Chemo VaCa
I had my Doctors appointment last Monday and there is good new and bad news.
The good news is that my Ca -125 level has now dropped to a respectable 19. Three months ago it was at 1618, then 757 the following month. Last month it was at 45 before my third chemo infusion of the Dreaded Drug Doxil.
I have had sever reactions to this last chemo… all of them are what is considered level 4 (the highest and worst level of side effects). In fact, I am still having side effects after 4 1/2 weeks! And no, it isn’t fun. And yes, I am tired of the side effects. They are wreaking havoc with my everyday life!
So… I am now on a little Chemo Vacation. time to give my battered warrior body time to heal itself and recover from the poison it has had to deal with for the last three solid months.
The side effects have been blisters like I never knew existed! blisters on the top of my toes… painful and bothersome. Blisters on my entire upper legs. Still there after three 1/2 weeks! Blisters inside of my mouth! I had to drink my meals for over a week. And very, very dry skin…. itchy and itchy….
And don’t forget the unrelenting fatigue. I have to nap every single day!!!
So I am looking forward to this little chemo vaca.
July 28, 2011
Feeling Better
Today I am feeling a little better. The Triage nurse, Robert, called me and suggested that I also rinse my mouth with salt water. I like that idea and wonder why I didn’t think of it myself! That just tells you how unclearly I am thinking, because it is probably one of the first things that I would suggest to someone!
Any way, I have been using baking soda rinse, and a medical concoction called magic mouth. It sort of helps to heal and numb the mouth sore pain. Now I use salt water rinse first.
I could hardly eat yesterday, so I called my sweet neighbor who has brought over ‘green drinks’ for me occasionally during the course of this cancer. I took over some fruit and vegetables and she juiced and pureed them for me. I at least had some nutrition for my battling body. Then I called a friend of mine who sells high dollar juicer/blenders. They brought a sample machine right over that I could try out…. So thank you to my ‘blending angels’ for making it possible for me to have some high quality nutrition and to be able to prepare it myself.
One of the other problems is that my immune system has also been attacked by the poisonous chemo drugs and so I am unable to fight off infections and help my body heal as it would normally be able to do. The practical result of these problems is that it takes longer to heal, so I guess these sores will be around for a while … I wonder how much weight I’ll lose?
July 25, 2011
Chemo Update
Well, Portland Firefly had chemo 11 days ago. This was my third infusion (fancy word for chemo) of a drug called DOXIL. I now have a love/hate relationship with Doxil.
I love it because I am having a very good response to it and the side effects are minimal.
I hate it because the side effects are putting me at the end of my rope. The Doxil side effects are very different from the previous side effects that I experienced while on Carboplatinum/Taxol.
Yes, there is the constipation and the slight nausea. I have figured out how to keep those under control. The new thing is that I must stay out of the heat and the sun; the same thing for any thing that I ingest. I thought I had that figured out, but evidently not. Yesterday the inside of my mouth broke out in mouth sores… my mouth is sore that it hurts to eat! I just had 2 popsicles for lunch!
Also the tops of both of my legs from the groin to the knee have broken out in tiny little bumps which cover my entire upper legs. Uncomfortable? Yes. Impossible? No. Irritating? Yes.
Add to that the problem with my second toe. This problem started even before I finished receiving the drug in the treatment room. My toe nail started to lift up. It lifted up more before I was able to get home. By day three, the poor little toe was swollen to twice its size with a big “Doxil Blister” that ran its entire length. There was another one between the toes. That one popped by itself the third day, but the other one just kept on growing.
Finally yesterday, it started to ooze out some of the fluid, which started to relieve some of the pressure that I have had for the last 11 days. But it wasn’t until this morning that most of it drained out. I thought that all that had to happen now was to keep it covered and dry and clean.
But no! Now it is filling up again. Add to that the uncomfortable leg rash blisters, and my swollen and sore mouth and Firefly is pretty much ready to give up. And so… I hate these side effects… I’m going to see if I can eat a big juicy peach and watch some inane thing on TV or maybe read a book. Or take a nap… or …..
July 19, 2011
HOLLYWOOD
Did you Know?
The Hollywood sign was first erected in 1923. Conceived as a real estate ad, it originally read Hollywoodland. The sign stands 50 feet tall, stretches 450 feet across, weighs 450,000 pounds.
July 16, 2011
Chemo Again
So… I had chemo yesterday. I had to go to another facility on the other side of town for my infusion because there is a nation-wide shortage of my drug, Doxil, and only one clinic had the drug.
Last night I thought that one of my toenails looked like it was lifting up. This morning that suspicion was confirmed. Yes, in just a few hours this life-saving poison has caused one (I hope only one) of my toenails to completely lift up and it is now about halfway off. It seems that there is nothing that I can do about it at this point. I just need to keep it clean so it doesn’t get infected….
And since it is summer, the food lady from church is on a month-long vacation – I wondered why I hadn’t heard back from her – so I’m on my own for food. I’m Ok, don’t worry; Firefly has food. Fortunately on Thursday I stocked up on easy to prepare food from Trader Joes along with tons of yogurt from Safeway. Then Thursday night I cooked up some entrees for later on and put them in the freezer.
Now for the great news that goes along with my Chemotherapy…. My CA-125 results.
To recap — CA-125 normal is 35 or below.
May 2011 1618
June 2011 757 – dropped in half
July 2011 47!!!!! So this drug is working also….
There are a few reports – not many - of women having a complete remission after this drug and I am praying that I will be one of them. I am willing to endure the side effects if it means that I can live basically symptom-free for several years… Oh how I would love that!!!! What a dream that would be.
PS: Shortly after this post published, the food lady called me. She is bringing over Mac-n-cheese for me tonight… so I guess she is back from vacation and I’m getting food!!! I’m glad, because I am having an energy drain. Time for a nap….
July 14, 2011
A Busy Week
Well so much has happened this last week. First of all, my author’s copy of my book, TIE ONE ON has many more errors than I noticed at first glance. It now has to be redone. My Editor, Dee now has the files and she will be making the final changes. This gives us the opportunity to change and enhance the photographs so that they will be more the way I had envisioned; so this is a good thing.
Last Friday I traveled to Washington, DC for the Ovarian Cancer National Alliance Conference. This is an annual conference that is a priority for me to attend. The information that is presented by nationally recognized Doctors is outstanding and is on the cutting edge of Ovarian Cancer research and clinical trials. In addition, it is always so inspiring and uplifting to connect with other Ovarian Cancer survivors in a positive and rewarding manner.
After Washington, DC, I travelled to Atlanta where the ICRS (International Christian Retail Show) was being held until Wednesday. This is the largest and most widely attended show of its kind in the world. There are venders, and buyers from all over the world. This was the debut of my book… even though it was the wrong galley. I just could not pass up the opportunity to make the contacts that I knew would be possible for me to make at that show. Portland Firefly made the absolute right decision to attend. I connected with 6 international retailers and at least 50 retailers here in other parts of the United States. The big question now will be if they decide to order my book or not. Most of them, particularly the international retailers, were very interested and excited about TIE ONE ON since there is not another book like it out there anywhere. Actually, many of the domestic retailers were quite excited about its possibilities also.
I arrive home late on Wednesday night (actually early Thursday morning) and had an errand-filled day trying to get ready for Chemotherapy on Friday ~ tomorrow. More about that later….
I hope everyone has a great weekend; I have more to tell…..
June 22, 2011
Doxil # 2
I started on a different drug for my Ovarian Cancer recurrence. My CA 125 had skyrocketed to 1618 (normal is 30 or below) just before my first Doxil infusion May 13, 2011.
It is usual for there to be a 2 to 3 month lag time in any measurable results from this drug Doxil, so we were not expecting to see any decrease in my CA 125 levels. In fact, they often increase the first month on this drug.
Enter Amazing Firefly!!!!! When I went for my second infusion on June 17th I had hoped for a decrease in my CA 124 level because of how I was feeling. I was not experiencing hardly any pain, other problems that had been very apparent had greatly lessened and my energy level seemed to be a bit higher. The lower abdomen pain/gurgling was almost completely gone and my color seemed better, not only to me , but also to my family.
Ah, yes! My CA 125 had indeed gone down! It was now at 757! Another one of my favorite airplanes! Yep, it had decreased by about half! Everyone at the doctor’s office was happy about that including me!
And so, I had my second infusion of Doxil and went home to rest some more while I fight this sneaky opponent who is trying to invade my body. Is cancer like the ‘invasion of the body snatchers’? Well, I must fight to keep it from invading my body any more! Go Doxil!!!!
May 31, 2011
Impressive Firefly
My doctor does a thorough exam on me every time I see her. Part of the exam, she listens to my lungs and heart, she palpates (feels) my abdomen and then gives me a complete pelvic exam where she is checking for any growths or changes from my last exam.
At my last appointment, she made the interesting statement, “Firefly, you are impressive”. She was referring to my book, TIE ONE ON which had just gone to the publishers. By the way, she wrote a beautiful forward for my book.
During my exam I heard her muttering “hummmm, impressive.” My interest was piqued because I knew that she was not referring to my book! She told me that she had felt (“Here you can probably feel it, too”) a smooth mass in my abdomen. “It is the size of a canta.. no… a honeydew melon.”
I have something the size of a honeydew melon inside of my abdomen! No wonder I had urinary frequency! and mild abdominal pain! It had grown from nothing within the three weeks since my last exam with her. Even though it is fast growing, she is not too concerned about it because she thinks it is fluid filled and will resolve with the already scheduled Chemotherapy.
She gave me the option of having another CT scan, but I decided not to have one at this time because she didn’t seem to think it was necessary. Either the chemo will shrink it or it won’t. If it does, fine. If not, then we will proceed with further tests.
Now I am 9 days out of chemo and I think the chemo may have helped to shrink it… but hey, what do I know! I didn’t even know it was there in the first place!
I have continued to have lower abdominal pain which can be the result of the chemo killing the cancer. Yep, that’s what I am saying these intermittent shooting pains are!
May 29, 2011
Jeannie Came Through!
Wow, what a great dinner was delivered to me on Friday. I knew that Jeannie would be bringing Shepherd’s Pie, but wait til you hear what else! She came into my home with three big bags and smelling like a delicious restaurant! The first thing she unpacked was the juice that she picked up at the grocery store. Next was the loaf of fresh homemade bread (onion/cheese) which was still warm; I immediately took the butter out of the refrigerator! Then she gave me the half-gallon of spumoni ice cream to put in the freezer. I knew that I’d never eat all of it so I dished out part of it and gave her the rest for her family. She totally heard me when I said that nothing has tasted very good recently and brought things that are ‘flavorful’ but not spicy. Yummy! Thank you, Jeannie.
May 27, 2011
Feeling Better
Ah, yes! Today I am feeling better. So well in fact that I actually got dressed for the first time in 8 days. And then I took sweet understanding Mercedes for a nice medium walk — her longest one with me in over 9 days! And then… we went for a ride in the car. She loves to ’go bye-bye’ in the car. I needed to go to the bank, so we did the drive-through bank (which is 3 miles away instead of .5 mile) where she always gets a little treat and I picked up a Subway salad. It was nice to go out for little drive and I didn’t even mind the afterschool traffic which usually I try to avoid.
All food still tastes not very interesting… In fact, I had two grape popsicles for dinner last night! But Shepherd’s Pie, courtesy of Jeannie is on its way for my dinner tonite! I especially like it when a little dessert is also brought along!!! We shall see!
May 24, 2011
Doxil
Doxil is a cancer killing drug that is administered via infusion (injection into the vein). It is ‘wrapped’ inside of liposomes so it is sort of ’slow-released’ over the course of 2 – 3 weeks.
On my other chemo drugs, the worst side effects usually occurred on days 3-5 with residual until day 10 or so, followed by the lowered blood counts until they started to climb just before the month was over. And then it was time to start all over again. The side effects became progressively more toxic as my treatments progressed.
This toxicity is the reason why some chemo therapies must be discontinued for certain patients. The reason that I am starting on this new drug is because my 2nd recurrence is coming so close to my 1st recurrence and therefore the protocol is to change drugs, since obviously the other drug did not give me a ‘remission’.
With Doxil, the maximum ill side effects do not manifest until day 5 and lasting until day 10. It is a whole different ‘ball game’ so to speak. The rules are completely different. Maybe the outcome will be different also. The main side effects of this drug ~ Doxil ~ is blisters on the hands, feet, mouth and tongue & throat. To prevent these blisters, you are supposed to ‘ice’ your hands & feet and suck on ice chips during the administration of the chemo –which takes about two hours. Then you are supposed to ice your feet and hands as often as possible for the next many days. Along with this, no pressure is to be put on the hands or feet and no repetitive motions. No typing. no vacuuming, no sweeping, no washing dishes, no chopping food, etc.
As far as food goes, there are many restrictions … nothing hot, nothing spicy, nothing citrus, nothing acid. All food is to be consumed at room temp or below so I heat up my food, then let it cool down before I eat it! Oh, no hard vegetables and I only eat my beloved apples if they have been ‘softened’ as in apple crisp! The wonderful ladies from my church (make that Suzy LaFrance) have made sure that I have had meals that I could eat. This is a wonderful ministry and one that I am very grateful for especially because I did not know of all the food restrictions prior to my infusion on Friday so I could prepare my food ahead of time.
I have alredy been on the computer too long right now… my hands are starting to burn… time to soak them in ice.
May 20, 2011
Doxil Chemo
My new chemo drug ~ Doxil ~ has some pretty awful possible side effects. Most notably, blisters on the hands, feet, mouth & throat. I am supposed to ice hands & feet and suck popsicles/ice chips during chemo infusion.
I asked my triage nurse at the Onc center if I should bring my popsicles and ice. He told me to bring them because they have limited source of ice (& probably no popsicles). I am bringing the freezer blue ice packs ( I have three of them in my freezer for back pain) and my package of Trader Joes Lime popsicles! No hot drinks, no hot food, no spicy food, rinse mouth out frequently, salt water rinse is good. Wear non-restrictive clothes…. guess that means moo-moos & ‘housecoats’ for around here. No tight shoes… No acidic food. No jewelry. No HOT Showers. Groan… I love hot showers…. thank goodness that the sun finally showed itself here in Portland!!!
I also have to have an echocardiogram before I get the Doxil; guess it can be bad for the heart!! Great!!!
But… in spite of all this I am looking forward to having Chemo. Why? Because it will kill the cancer, the pain will go away, and I’ll start feeling better soon! Let’s hope! And pray!
May 19, 2011
Health Update
I’ll start with the health update first. Normal Ca -125 (the blood test for ovarian cancer) is 30 or below. Mine went from 18 to 53 in March. In April it skyrocketed up to 553. Normally I would have started Chemo at that time, but since I was feeling pretty good and had no pain or major symptoms we decided to delay. I was hoping to be able to wait until next week, but that is not going to be the case.
I’ve started having constant abdominal pain and I just don’t want to deal with it any longer. Since I will eventually need to have chemo, I am ready to start now. We are trying to get my appointment rescheduled for this Friday ~ tomorrow. I still do not know what my CA 125 is at this time, but I’m sure that it is quite high. I’ll get the results at my appointment.
Since this second recurrence is coming so close to my last recurrence, I will not be able to be given the carboplatinum that I have such a good response to. My doctor will be giving me a drug that is new to me ~ Doxil. the side effects are different and I have no barometer as to how I’ll respond to it or what side effects I might experience. Some of them are quite unplesant — blisters on the hands and feet, mouth, tongue and who knows where else. So prayers are definitely in order if you are so inclined. Other than that, no hair loss!
May 18, 2011
Where is Firefly?
Hello friends! I know you have been wondering if I’m doing Ok or not and there is much to tell.
New grand baby, new doggie, new recurrence of same old cancer, book sent to publishers and so life goes on. I’ll try to get you caught up over the next week.
May 17, 2011
Chemo Soon
I’ve started having quite a bit of abdominal pain, so I’ve requested to move my drs appt up a week to this Friday with Chemo to start then as well. I’m just waiting to hear back– I expect a reply tomorrow.
The sooner I start Chemo, the sooner the pain will go away and so will the cancer and then I’ll feel better!!!!
So.. it’s all good!
