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…
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.
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!).
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!
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…
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.
February 24, 2012
Today I go and see my Doctor and get my Chemo. I was notified yesterday that my dose of DOXIL had indeed arrived and was waiting for me! This is great news for me. It is helpful for me to know ahead of time that it is there, because there are some preparations that I have to make before I receive the DOXIL infusion.
I cannot vacuum, cannot do laundry, cannot chop/prepare foods, cannot wash dishes, and I cannot wear any tight clothes. There are also food restrictions: no tomatoes, no citrus, no spicy foods. So my days prior to the infusion are busy with house cleaning and shopping and meal prep. I also cannot do any crocheting and so I have a supply of interesting travelogues to watch! And for two days after the infusion, I have to soak my hands and feet in ice water to prevent the blistering side-effects! So no typing!
I had minimal side effects from the last dose, so prayers for the same again this time.
January 17, 2012
OK, today I am feeling a little bit better. I have forced myself to take sweet Mercedes out for a walk every day. Not necessarily a long walk by others standards, but long by ours. We usually walk for about 5 -8 minutes on a good day. So I have thoughtfully tried to bump that up to at least 15 minutes a day with a couples of extra smaller walks thrown in.
I still have low energy, and would just like to hibernate, it is the middle of January — so I am acting like a lazy bear. Even though there are several good movies out now, I don’t even want to get dressed and go to the movie! I need to get a pedicure before my next chemo, so I actually called the salon today, but wasn’t ready to make an appointment. Maybe tomorrow! There’s always tomorrow. I guess my mantra right now is “Don’t do today what you can put off til tomorrow!” Yep, that’s exactly how I am feeling! Do it some other time.
January 15, 2012
I cannot believe that is has been such a long time since I posted. I am doing fine… I tolerated the carboplatin chemo just fine with minimal side effects. I now am suffering through a period of depression that I am having trouble shaking. Oh, I continue to do a few things and to get out of the house now and then, but I would really just rather lie around in my jammies all day and crochet or watch TV or both. Oh, and spending endless, mindless hours on stupid computer games…
I’ll get through this… it’s just a phase, but there it is and I am owning up to it!
December 26, 2011
This question “So, how are you really feeling?” is asked of me often. So here goes…. Are you REALLY ready for the answer?
I am feeling well. Not good, not fine, not great, but well. I am not well, but I am feeling well. I get tired easily, but… I have been able to do most of the things that I wanted to do this holiday season. And enjoy them while doing them.
I did not get everything done that I wanted to do… but who does?
I started my fourth go-around for chemo on Nov 30th. I am in my 3rd recurrence after my initial diagnosis on March 20, 2009. Since I did not want to lose my hair again, I opted for just having the carboplatin along with its supporting drugs administered at chemo. No taxol this time. At least not right now. If I respond well to just the carboplatin, then I’ll continue with it for 4- 6 months.
My color was very bad when I re-started chemo on Nov 30. It has been very slow to come back around to a little more pink from the ashy-grey-yellow it was the end of November. Actually it isn’t exactly pink right now, just a lot less grey-yellow; and more of a pale color. I do have almost constant reflux, nausea, nightly night sweats and some leg pain. But these do not preclude me from doing what I want to do on a daily basis.
I try to pace myself for my activities and I just sit down when I need to! So, I have a few more days to get things done before the next dose of chemo!
December 4, 2011
OK, I know, it’s more than one day later. Give me a break! I just had chemo… I’m doing very well to get out of bed and take little Mercedes outside several times a day. The sun has been shinning here in Portland for the last few days and it is to continue for the next several days! Yeah, sunshine ! A few hours ago, the ‘brain fog’ started to lift slightly. I am still being very proactive against nausea, and I am eating little bits of food several times a day… and I get up and walk around every now and then. No nap today, but I bet that I climb into my nice warm bed pretty soon…. I think I hear my pillows calling to me……
My CT Scan was done last Monday. It showed two golf ball sized fluid filled cysts and several smaller ones. It seems that my small intestine ( and something else — too lazy to look it up) is ‘glued’ to the back of my abdominal wall.. so it doesn’t ‘move freely’ like it is supposed to. No I didn’t even bother to ask what that meant. I am just hoping that everything resolves itself with the chemo.
All in all I am feeling pretty good.. had some fatigue last week and a lot of weirdness – light-headedness some minor nausea contained with drugs. So I need to finish getting things done!!! Like that’s really going to happen!!!!
November 29, 2011
I had my blood drawn and saw my doctor. When she did the physical exam on me, she felt a golf- ball sized mass in my abdomen that wasn’t there two weeks ago. She decided that I should have a CT scan and gave me the option of having the Scan on Monday with Chemo on Tuesday or visa versa. I opted to have the CT Scan on Monday so I could get home sooner, because I still had lots of catching up to do from the holiday visiting. That meant that I would have Chemo today! so that is what I did.
June 22, 2011
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
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 24, 2011
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 19, 2011
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 17, 2011
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!
December 19, 2010
At the church that I attend, there is a care-team that is to assist those in need. The new co-ordinator, Suzie has done a fabulous job. She called me and asked what they could do to help me get through my chemo. I requested prayers and said that food preparation is often tiring and time consuming for me especially during the first week after my chemo.
She really had the women of the church come through for me! She had someone at my doorstep every single night for a solid week. I was like the doggies in Pavolov’s trials. When it started getting dark (about 4:30 here in the Pacific northwest) I would start listening for the doorbell to ring for supper!
And then the 8th night a neighbor whom I had not met and who also attends my church called me ‘just to see if I might like some pasta salad.’ I love pasta salad! And I love meeting lovely nighbors!
And so, Portland Firefly is very grateful to all the great cooks who took care of not only my spiritual needs but also my physical needs while my poor battered body is trying to win this war.
A big thank you to “The Ladies Who Do Dinner” for others!
December 18, 2010
Ten days ago, I had my last chemotherapy (for this go-around). It was actually my 29th chemotherapy.
For the first week, I didn’t get dressed. The first several days I was just really tired. I’d eat breakfast, do one or two things, and then go and take a nap. After my morning nap, I’d have lunch, watch a little TV, then take my afternoon nap. Then it was time for dinner, a little evening news and TV then early bedtime!!!
Not much of a life….. But then Chemotherapy is poison and my body was fighting hard.
That was my last chemo…. until the cancer comes back. This cancer almost always does.
Prayerfully, I have at least 9 months symptom free again this time……. Longer is better……
December 6, 2010
I have been fighting depression for several weeks now. I cannot seem to shake it off. I think it is a combination of the reoccurrence of my cancer, the days becoming shorter and our Portland weather being very grey and chilly. By the way, Portland is so far north that it is dark by 5:00 pm now because the sun sets so much earlier here than it does in California.
I also was very sick for over a week from my last chemo and for the first time in my cancer odyssey I am not looking forward to chemo on Thursday. Also, my doctor wants to put me on a new drug therapy that I will be on for a very long time… and I was so looking forward to being off chemo again for a (hopefully) long time. It looks like it is not going to happen. And that is probably the thing that makes me the saddest.
On days when I am not to chemo sick, I try to make myself go out side for a walk. Last week I started using the little light box that I bought at Costco the end of last winter. I usually sit in front of it when I get up in the morning as I eat my breakfast and try to wake up. I really think it is a valuable tool and I’ll continue to use it.
I did get my home decorated for Christmas and I try to have a few events to look forward to doing, but it only helps a little. I will just keep going along, putting one foot in front of the other….
November 10, 2010
Ok, I am finally getting around to giving you all the complete update on my first reoccurrence of Primary Peritoneal Carcinoma.
Back in early August, I started feeling symptomatic but only made a note to myself of the symptoms that I was feeling. My CA 125 was normal that month with a reading of 14. (Normal is 35 or below). The next month, my CA 125 was 18.
Just before I was to travel to California for my girlfriend Chris’ funeral, I insisted that I have another blood test drawn. While I was at her Rosary I was given the news that my level was now 265. An appointment for a CT Scan was made with the doctors meeting to follow a few days later.
My CA 125 skyrocketed to 444 before I could be given my first dose of life-saving poison. But three weeks later, my CA 125 had dropped as dramatically as it had risen — now it was at 96 after just one chmotherapy dose.
I had my second dose of Chemo two weeks ago. I’ll have my blood levels checked tomorrow and I’m scheduled for Chemo again next Thursday.
October 28, 2010
Today I’ll have chemotherapy again. It starts with a blood draw, then I see my new doctor, then he sends me to the chemo room.
I had to restart Chemo three weeks ago because my CA -125 levels skyrocketed to 265 in one month and then to 444 the next week! Back with a vengeance!
I had Chemo on a Thursday and then my girlfriend and I left for Arizona two days later for a trip that we had planned and paid for 7 months ago when I went off Chemo. I tolerated the trip very well and had minimal side effects. My color started looking much better about a week ago and I also was feeling much less ‘symptomatic’; so I have no doubt that the chemo is working. I will have another CA -125 drawn this morning and I’ll get the results tomorrow… but I’m not on ‘pins and needles’ because I know that the chemo is working by the way that I am feeling.
I am really looking forward to my Chemo today because I know that I need it and I know that it is helping me.
I know what the big question is in your mind…. because it is in ours, too. How much time do I have?
The doctor said that he can pretty much guarantee that I’ll be here in 1 year but he can’t address what kind of physical condition I’ll be in. I may have an excellent response from this Chemo and be in very good health or I might be just hanging on. Hard questions with hard answers, but realistic; and that is what I strive to be. I do not want to put my head in the sand and I do not want my Children to be caught unawares and not ready.
All that being said, I expect to be here for many years to come. I have had an excellent response from the Chemo in the past and feel that I am continuing to do so right now. I have much yet to do…..
July 3, 2010
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 6, 2010
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.