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…….
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 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.
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 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 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.
June 14, 2012
- Well as you know, the CA-25, the tumor marker for my type of cancer has been going up while on chemo for the last 4 months. 6 weeks ago, it was 430. Then two weeks ago it had jumped to 1153. Due to my doctor being ill and the wait to see a new doctor and get started on a new chemo protocol it was another 2 weeks without chemo. My last CA-125 was drawn on Tuesday June 12/12. The results just came back today… It is very high… much higher than even I had expected it to be. In fact it is the highest that my CA-125 has ever been.
It is 3231. That is almost triple in two weeks! Whoa! This cancer wants to take over my body!
It sounds like some sort of lottery number. Gosh maybe we should play those numbers! Let me know if you win! I just want to win this battle with the cancer.
For the record, I am feeling well and dong well. Praying that this new ‘jewel’ of a chemo, Gemzar works for me right now. By the Way, this CA-125 was taken right before my infusion of Gemzar, so we would have a good baseline of where my blood levels were before the Gemzar treatment began.
I hope you will be praying for me, too.
Normal is 30 or below.
June 11, 2012
I have put off writing this post for several reasons… Lets see … where do I begin.
My last doctors appointment was supposed to be one and a half weeks ago, but my regular doctor was ill and unable to see me. So last Thursday, I was seen by another doctor ~ one I had seen previously whan my regular doctor was on a sabbatical.
This appointment was especially difficult for the new doctor because he had some important decisions to make regarding my treatment and he needed to read about 20 months of treatments given by another doctor along with studying my test results and reactions to chemo. It took him a long time to read over my chart but he was very well prepared when he came into the examination room to see me.
I like this doctor and I appreciate what he had to go through before he even saw me. Why, you ask? Here is the reason….
For the last 5 months, I have been on Doxil, a chemo with many dietary restrictions and side-effects. At first I had a very good response to Doxil, but the last 4 months, my CA-125 (the cancer tumor marker for Ovarian Cancer) has been going up. This last month it went up dramatically. To recap, normal is 35 or below and mine had been hovering around the 430 level for three months. This month it shot up to 1165 or so. That is an increase in 4 weeks of two and a half times. Firefly has been feeling well, having lots of energy, and able to get things done, but obviously the cancer is growing and rapidly. Knowing all this prior to meeting with the doctor, I already knew that I’d be switching to another chemo; the question was,”Which one?”.
In the past, this particular doctor mentioned that there is an arsenal of about 24 different chemos that can be used to fight my primary peritoneal carcinoma. It is just a question of finding the right one that the cancer will respond to at that particular time. Did you know that the cancer changes inside our bodies as time progresses? This is the reason that cancer becomes immune to certain drugs and is also the reason that doctors like to administer chemo when the cancer is actively growing. (If actively growing, it is taking up ‘nutrients’ and will also take up poison!).
So now I shall be starting on Gemzar with a different administering protocol than I have been used to having. This ‘jewel’ of a chemo is given one week, then again the next week, then the third week off. Then you start all over again. It is rigorous but the side-effects are supposed to be quite tolerable and it looks like I may be able to still keep my hair again. I am really liking having hair!
The plus side to this drug is that now I can eat all of the foods that were forbidden while on Doxil. I can also take hot showers and have a glass of wine. And don’t forget the massage! So all in all I am looking forward to getting started on this new course of treatment.
Please pray that I do in fact keep my hair, that my blood levels will remain near normal (low platlets is common with this drug), and that this ‘jewel’ of a drug, Gemzar, will give me a good response and allow me to have some chemo free months. I am getting tired of having to have chemo month after month after month…. I do have a life to live, you know!
I will keep you updated as the weeks go by. The big thing to remember is that I am told that I look good, the doctor was very pleased with the results of the physical exam, and my general health is great (except for the cancer, of course!).
June 9, 2012
I apologize to all of you who have been wanting an update and wanting to know how I am doing. I just have not felt like writing. Actually, I have not felt like doing anything of substance. I think I must be mildly depressed because I just want to sit around all day and look at the mess around me and think “I need to do something about this, but it will still be there tomorrow.”
Yep, I think I must be depressed. I need to get back on my mega doses of Vit D. That usually helps a bit.. It would also help if the sun would come out a little more often. So far we are in the coolest June ever. Wait! It’s June already? Why am I still turning on the heat? Yes, we actually had temps in the low 30′s this week!
Oh well, maybe I’ll take a shower and actually get dressed today! More to follow after a while….
I do not like to write – I like to have written. Gloria Steinem
April 27, 2012
It has been one month since I had chemo. I had my CA-125 drawn yesterday and the result came back today before my doctor’s appointment. Normal is 35 or below. Last month my CA-125 was 422. Today it was 430. I have been on chemo for the last 4 months. In other words, my CA-125 (the Ovarian Cancer Tumor Indicator) has continued to rise while I have been on chemo; it should go down while on chemo!
While I was slowly starting to mildly ‘freak out’ over the increase in the result my doctor quickly said that she considers my CA-125 to be “stabilized’. This is a new word for me as far as my disease progression/experience goes. My doctor explained that my CA-125 may drop next month, it may stay the same, or of course, there is always the possibility that it might go up. In any event she is considering this latest result to indicate that my cancer has stabilized for now. It sounds OK to me, but is just some sort of phrasing to make the patient (me in this case) feel better about the test result. My latest mantra for now “The CA-125 is just a number. It only indicates a trend.”
I had combination chemotherapy again today. Doxil and Carboplatin are the main drugs that I received along with several supporting medications. It took over 5 hours to administer them all. Tonight I have a headache that just won’t seem to go away … so I am treating that.
I am feeling a bit ‘needy’ tonight and couldn’t even think straight enough to think what meds might help my headache. I finally decided on a combination of Aleve and Tylenol after an afterhours call to my on-call Doctor. I just couldn’t think straight enough to make a decision about the meds and I needed help with the decision.
Whoa! I almost forgot about the constipation that follows chemo –better be proactive about that!
So, I am back on the chemo merry-go-round. I’ll have a difficult 2 weeks and then I’ll start feeling better and then try to get lots done in 8 days before my next chemo!
Sure hope this headache goes away soon!
April 6, 2012
This has been the worst nausea that I have ever had from chemo. It is now 11 days after chemo and I am still experiencing it constantly. I take my anti-nausea drugs, but it is still there.
Today I felt well enough to get dressed and drive to the acupuncturist office. It was my 3rd acupuncture treatment and I do get some good results from it. It is really a cool therapy and so amazing how the body’s own energy works to heal it!
Gradually feeling better!
March 30, 2012
Well, I had chemo on Tuesday which is why I haven’t written. This time, the treatment was Carboplatin and DOXIL. Only I didn’t get as much DOXIL as my doctor wanted me to have so I may not have as good of a response this time around.
But if you want to gauge the success of the treatment on the amount of side-effects, then I should be cured! I felt good the first two days, thanks to the heavy-duty steroids and IV anti-nausea meds. But today ~ WOMP! The nausea hit hard. I am trying to keep it at bay and I am about to make my second call to the Oncology nurse for more information if the nausea doesn’t settle down a bit. Maybe I need to go and have a little bite of something. This nausea is probably caused by the amount of Carboplatin that I have had over the last three years….. So, I ‘ll just power through…
March 25, 2012
I am a speaker for the national program called Survivors Teaching Students (STS). Last week, I had the privilege to speak to two different groups of students at Pacific University as part of this program.
It is always a thrill for me to be able to tell my story to others. First of all, we all like to talk about ourselves (tee hee, Firefly is no exception), but even more importantly, my story has the probability to greatly impact the professional lives of these students who will soon be out there in the medical field. I tailor my talk toward the generalities of the profession that these students will be going into so it has more relevance for them and hopefully they will remember the symptoms of Ovarian Cancer and also learn something from me that will greatly benefit them in their real world experiences.
One of the instructors asked if she could share my website ~ this one www.pdxfirefly.com ~ with the students in her class. I was thrilled that she wanted to do that. And so Students, My story actually begins around March 14, 2009 on this blog. You can go back in the archives and pull up my story from that time to now. I talk about everything that has happened to me ~ the physical, the emotional, the mental, the spiritual. It’s all in there ~ along with some other tidbits!
And so a special welcome to the students of Pacific University.
March 24, 2012
Well, March 19th, 2009 was the date that I received my Diagnosis of Ovarian Cancer. At 7:30 am the next morning, we were in the Gynecological Oncologist office. Within three hours, I was started on life-saving chemotherapy poison. The average life expectancy is 25 months. Three years ago, we didn’t think I would even make two years. Now here I am three years from this devastating, aggressive cancer called primary peritoneal carcinoma.
Wow, I am still alive!
I am still in chemotherapy, but I am alive. Even though I am unable to participate in life very much for two weeks out of every month, at least I am experiencing some longevity. That longevity has given me time for three more birthdays of my own, three more Christmases, three more birthdays of my adorable Grandson, and the birth of my precious Granddaughter ~ her first birthday is coming up soon! So I have seen some very special milestones that are important and memorable in anyone’s life.
Oh, I forgot, I wrote and published a book, have another on ‘on the burner’; I am President of my P.E.O. Chapter (currently in my second year) and making a positive difference in the life of our chapter. I also speak on a regular basis to 3rd year Medical students, Pharmacology students, and Physician Assistants as well as to women’s groups. Oh, and I pass out my Ovarian Cancer Symptom Cards to complete strangers whenever I have the opportunity to do so. So I have been doing some very positive projects that hopefully will have a lasting impact ~ even after I am gone. Something that will help others remember me…. and even more importantly remember the symptoms of Ovarian Cancer and that TEAL is the color of our ribbon!
Wow! I really never thought that I’d really see March 20, 2012!
Way to go Warrior Firefly!
March 15, 2012
I seem to be having minimal side effects from my combination of Carboplatin and Doxil. The biggest side effects for the latter half of the month is extreme fatigue. The first week I stay close to home, the second week, I try to get to the grocery store and the last two weeks before chemo, I try to get caught up from the first two weeks!!!
But I can only do one big errand a day and then I fall asleep during the evening news!
Let’s pray that this drug combo is working for me and killing the cancer, with God’s help and mercy.
March 8, 2012
The weather this last week has mirrored my emotional and physical gamut. From dreary, cold, snow-shower filled days, to warm sunny days filled with the promise of early spring and health and happiness and hope.
Today it is clear, cold, crisp, the sun is shining and the beautiful blue sky has just a few of those promising fluffy white clouds. I finally took my little Mercedes for a walk…. we walked around the cul-de-sac twice… once each way… We haven’t been for a proper walk in over a week. She is such a wonderful pet now…. adapting to my needs …. as I have modified my life for hers.
She is a joy to me and we have come a long way on the road to companionship in each others life.
March 7, 2012
I really didn’t get this question answered for you the last several days…. so here goes…..
I am doing fine.
I had my usual week of recliner time with frequent naps and forcible activity trying to manage the chemo side effects with appropriate medications and still trying to eat healthy (whatever that means!).
I have noticed that as the number of doses of chemo increases over the years, that I experience more nausea. It is still easily controlled or rather should I say, easily lived with, but still there nonetheless. However it does not negatively impact my life too much yet. The worst part is that the anti-nausea meds make me sleepy . .. so I take them at night!
March 6, 2012
I am just now coming out of the Netherland of last week’s chemo brain; and I just reread my previous post. It does sound sort of depressing. And I have to admit that I was feeling very depressed at the time it was written and all of my musings are those that I was feeling at the time and for days before and after. The intent of that post was to express my true feelings… not to upset anyone and so I apologize for any upset caused by my words. At the same time, the point of this blog is to keep you appraised honestly of what is going on in my life and so for the honesty, I will not apologize. I do want to thank all of you for the prayers and notes and cards and good wishes. They are a huge help in times of darkness.
And today I am somehow climbing out of the pit of darkness…..
February 26, 2012
As you know, my CA-125 blood test went up from 142 to 529 this month after I had chemo. This is the first time that my CA-125 increased while I was on chemo.
At first I wasn’t too concerned about it, but since I’ve had 4 days to think about it, I find that I am starting to get depressed and wonder if this could be the ‘beginning of the end’. Oh, yes, I do try to put those thought out of my mind, but there they are… creeping right back in. I’ll find out more tomorrow, but that doesn’t change the facts. And it’s the facts that present the clearest picture.
For the last two days, I’ve been referring to it as ‘just a little setback’. Mostly to keep those that love me calm; and I really do believe that is what it is. But…. The grim reality of this horrible cancer is always there in the back of my mind.
Just to remind you of the statistics …
21,500 women are diagnosed with Ovarian Cancer annually .
15,000 women die of Ovarian Cancer annually.
Ovarian Cancer is the Fifth leading cause of cancer deaths in the nation.
67% of women are diagnosed with late stage Ovarian Cancer.
The five-year survival rate is 30%. (Yes, that means that only 30% of women diagnosed with Ovarian Cancer live 5 years).
I am approaching my 3 year anniversary in March. I have been on chemo all but 9 months of that time (and not 9 consecutive months).
I actually have a very rare (and aggressive) type of Ovarian Cancer (Primary Peritoneal Carcinoma) which is present in only 1% of Ovarian Cancer patients.
The average life expectancy is 25 months –and I’m well past that mark.
February 25, 2012
Well, it looks like my CA -12 went up. This is the first time this has happened… no response to the chemo.
I did not have Chemo yesterday as scheduled… we are revisiting the drug cocktail that I’ll be receiving.
1/26/12 142 I was on Carboplatin those 2 cycles.
2/23/12 my CA-125 has jumped to 529. After 50 cc of DOXIL one month ago.
I do know that sometimes the CA-125 doesn’t necessarily come down for a few months on Doxil, but that is a pretty big jump up as opposed to staying about the same.
Right now, I do not know how I am feeling… I need time to process and talk to the doctor.