April 27, 2012
CA-125 Stabilized ~ Then Chemo Again!
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
Nausea Update
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
Chemo again….
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
Welcome to Pacific University Students
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
Three Year Cancerversary
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
Busy, Tired Firefly
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
Companionship
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
How are you Doing, Firefly?
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
Do I Apologize?
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
A Setback
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
CA-125 Goes Up
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.
11/28/11 663
12/29/11 263
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
Chemo Day
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.
February 21, 2012
DOXIL Drug Shortage
If you have been following my story, you know that I had a very good response to DOXIL. You also know that DOXIL is no longer manufactured here in the United States due to manufacturing problems at the ONLY PLANT THAT MANUFACTURES this life-saving drug here in the United States. How can this happen here in the United States you ask? WEll, the answer is long and involved and has to do with J & J (yes, that J & J) owning the sole manufacturing rights and their sole manufacturing plant under Ben Venue is the plant that has equipment breakdowns.
It has been a full six months since I received the drug, DOXIL. I had to go on another chemo (which doesn’t work as well for me). Then, out of the blue, I received one dose of the DOXIL which I had the end of January. In three days I am supposed to go and get a second dose, but it is unclear if the drugs have arrived yet. So I don’t know if I’ll get the DOXIL or not!
Then this morning the FDA announced easing up on restrictions so that the drug can be imported into the US from foreign manufactures without the rigorous FDA testing route. This is the same drug, but it has a different name — LIPODOX.
FDA acts to bolster supply of critically needed cancer drugs
So, I’ll just have to wait and see if I get more of my life-saving drug or not!
February 7, 2012
Understanding Doxil
For many months now, there has been a shortage of Doxil here in the United States. I have been too chemo-brained to fully understand it, but over the last few days, I have discovered some information that helps to make sense of the ‘Doxil Maze’. Doxil is a chemotherapy drug that has a different delivery system to the cancer cells and therefore is of great benefit to many long-term cancer patients who have become resistant to other chemotherapies. The drug works particularly well for women who have Recurrent Ovarian Cancer.
Doxil is the name for the generic drug of doxorubicin liposomal.
Ben Venue is the sole contract manufacturer of Doxil for Janssen which is a subsidiary of Johnson and Johnson. Janssen holds the patent in Doxil.
It is my understanding that there are manufacturing problems which have resulted in the nationwide Doxil shortage.
January 31, 2012
Chemo Again
I had chemo last Friday. One of these days I’ll have to total up the number of time that I have had chemo. I think it is pushing 40.
This time I had part of the Doxil that was allotted to me. Doxil is the main Ovarian Cancer drug that is experiencing a shortage. I started on Doxil last May or June and had a very good response to this drug. I also had level 4 side effects due to the toxicity of the drug. Because of the toxicity I went off of the drug for a few months; this was when the national Doxil shortage became apparent to the medical community. My doctor immediately put me on the Doxil waiting list and that was the last we heard from Doxil. When I had my 3rd recurrence this Fall, I went back on a drug that I have had in the past with success — not great success, but acceptable success in fighting my cancer.
When I went in for Chemo the end of December, there was a surprise for everyone at the clinic….. Doxil had sent a dose of the life saving drug for me. With my name on it. No one else could have this dose of Doxil…. it literally had my name on it and no one elses!!! This was the first Doxil that my cancer clinic had seen since the summer… and I was to be the lucky recipient! The drug was shipped in two vials, one considerably larger than the other with the total dose being what I received during the summer months with good results. It is unknown when Doxil will be back in production in the United States. So… in an effort to make it last and not knowing if I would receive another life-saving dose, and in an effort to reduce the side effects, my doctor and I decided to only give me the large vial of Doxil. That way if no more is received, then I can at least have a ‘smidgen’ of the drug next month if no more comes in for me.
I have heard reports that Doxil is available in Canada and also in Europe. With my travel benefits, either one of those might be a definite possibility. I think I’ll do some advance research with my doctor and see just what the procedure would be if I do want to go to another country for this drug.
Meanwhile, you can pray that I have no ill side-effects and that I will also be ‘gifted’ another dose of Doxil right here at home. Because to receive this lifesaving drug is truly a gift to me.
January 17, 2012
Procrastination to the Nth degree!
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
Hi!
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 30, 2011
Chemo Today
I had chemo again today…. this is the second time for my 4th go around with Ovarian Cancer (actually I have PPC Primary Peritoneal Carcinoma). My CA 125 (a test to measure for Ovarian Cancer) was 669 one month ago. Yesterday it was 226! Good News! This means that the drug I am getting ~ Carboplatin ~ is working. Also the larger than golf ball sized tumors are not as large as they were a month ago! Yea! Now I am off to ‘recline’, ‘hydrate’ and rest! Tomorrow, I’ll make myself go for a walk!
December 26, 2011
So, How Are You REALLY Feeling?
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 17, 2011
Headache Gone
I went to see my doctor last Monday morning — She thinks that I had a virus of some sort. Now that it is almost a week later…I have to agree with her.
The only symptoms that I am having are the same ones that I have had for a few months…
My color was not so good – sort of ashy grey yellow, but I have ‘pinked up’ a little bit. My energy level is such that I really have to space out my errands and rest when needed. No shopping marathons for Firefly this Christmas Season! I do love online shopping right now!
December 11, 2011
Not doing so Well
Friday afternoon at 5:00pm, I started in with a horrible headache. Friday after the doctors have all gone home!!!! Just my luck! I was so foggy brained that I couldn’t think straight when my Doctor returned my call (via the answering service). I could hardly answer her questions coherently.
I also ‘thought’ that I noticed ~ thought is the operative word here ~ that my urine was getting slightly darker during the afternoon, but I hadn’t watched it long enough to tell for sure. I was too foggy brained to mention it to her! DUH!
Well by Saturday morning …. I was sure. Back ache, night sweats all night long, headache (gone thanks to pain meds) darker urine, feeling disoriented. So I called back. this time I got the Physician Assistant — but she didn’t want to give me an antibiotic. And she wanted me to got the ER ‘so I could be evaluated’. By a strange doctor! I refused to go to the ER with my blood count low ~actually at it lowest in the treatment cycle ~ and sitting for 6 hours with people coughing, sneezing, puking, and being exposesd to lots of unnecessary germs so I said that I’ll just have to wait it out.
Fever got worse… urine got darker — I called back. The PA said she would call the doctor on call. NOT MY REAL DOCTOR who knows me and knows that I know about my body– but some doctor on call who doesn’t even know who I am. The PA called back and said that I needed to go the ER. I refused for the 6th time and said something like — I’ll just die at home, but I’m not going to sit in the ER for 6 hours with all those germy people and then wait another 5 hours to get admitted and another 6 hours after that for someone to decide what to do with me. I just was not going to do it!
That is what happened to me when I went to the ER when I was first diagnosed with Primary Peritoneal Carcinoma.
I refused again and she said, we will call in a RX. Hallelujah!!!
I had already found a drive through pharmacy so all I had to do was put doggie in the car and drive there in my jammies and robe and slippers and pick up my Rx. On the way home we drove through Taco Bell and I got a salad— I can’t remember the last time I went to Taco Bell . Maybe 1996???? I hadn’t gotten dressed for several days due to not feeling well!
Within two hours of the first pill, I felt better.
But I’m off to the doctors first thing Monday morning to see what tests MY DOCTOR wants to run!
December 5, 2011
Urn Shopping
Hey, don’t get mad at me… it’s a fact of life. And nobody knows my tastes better than myself. If my ashes are going to be in something ‘forever’ then it better be something that I love! Can you imagine wearing a dress you hate for the rest of forever??!!! Anyway, since I am feeling good, I decided to do some online ‘urn shopping’. It sort of takes the fear out of it; besides I don’t want my children to have to make a decision about what I’d like to be in forever. Call me a control freak if you want…that’s Ok with me… but it’s going to be something that I really, really like!!!!!
So far the winners are all white with silver/pewter or maybe with a brass base and some white cloisonné. My absolute favorite isn’t big enough for me— only for someone 50 lbs. so now I have something to look for… And at least I have eliminated a whole bunch of urn styles that I do not like! And when I find ‘just the right one’ I might even buy it!
At lease no one will be ‘shopping under duress’.
Now for those of you that love me, I want you to understand something. I am not ready for the grave yet. I am just trying to get certain things in order as they approach me. I am feeling very well, I am doing very well and I expect to make that 6 year mark when my grandson walks into his first day of kindergarten! That means several more years of birthday parties for Grandbabies and Children and everyone!!!
December 4, 2011
CT Scan Update
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!!!!
December 2, 2011
More Chemo Up-date
Today is Thursday and I the sun is shining so I went for two nice walks. Then I remembered that I needed to go to the Doctors for a shot of Neupogen… since this chemo destroys red & white blood cells as well as platelets.
I felt sort of ‘weird’ while waiting to be taken back to the chemo room for the chemo nurse to administer my shot, but just figured it was a while since I took this drug and I did take a Zofran to keep me from throwing up all afternoon…. so I figured it was just the drug cocktail in my system.
Well, Patty, the oncology nurse was very observant and asked if I had been drinking water today. My inappropriate reply was “I just had a hot chocolate with peppermint tea in it, yummy.” That was when she looked me right in the eyes and repeated the question, using my name. Hummm. Where was I. My blood pressure was very low –86/56 so she hooked me up to an IV and gave me some fluids, covered me with a warm blankie, and I fell fast asleep for over an hour. She gave me my Neupogen and made sure I was OK to drive home and gave me a special hug before I left. Boy, did I need that hug. And I had to promise to drink lots of water!
Now that I’m home, I am feeling sort of weird. Kind of light-headed, but I am hydrating and I did eat a little bit of pizza. Maybe I go get a ‘cuties’ clementine. Tomorrow, I’ll tell you about the CT scan results.
December 1, 2011
Chemo Catch-up
Upon Physical Examination on Monday, My Doctor needed to order a CT Scan before I had my Chemo. So… Monday ( I lefet the drs office) and off I went to the Hospital for yet another CT Scan.
Back to the Drs early Tuesday morning for Chemo. No Doxil, so I went back on Carboplatin with supporting drugs. 5 hours of infusion made more tolerable with a nice visit from a sweet friend and naps on either end of the visit!
Wednesday I felt good…
