September 29, 2012
Please Pray for Warrior Firefly
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!
August 23, 2012
Portland Firefly Health Update
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 15, 2012
A Rough Day for Warrior Firefly
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 1, 2012
CA-125 and Chemo Recap
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
9/27/11 20
10/27/11 99
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…
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!
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 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!
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 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 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!
January 3, 2011
Contrite Firefly
I know … I have not written very much these last several months. I know that many of you have been asking for more … more information about my health ….. more stories…. and more thoughts.
Portland Firefly apologizes. I hope that I have not let you down, but at the same time I am sure that you understand that I have been pretty ill. When my first recurrence was confirmed the end of September by my blood tests it was no surprise to me. I had suspected something was going on for several months; it just took that much time for the blood test to confirm what I was already pretty sure was happening to my body.
When I did get the blood test results and sat down and thought about it for a few minutes, it was as though I had been hit in the chest. It knocked the breath out of me and I physically felt that some one had hit me hard in the chest! This is a phrase that I have heard used by others in different situations, but this is the first time that I had experienced it for myself. It literally knocked the wind out of my sails.
I know that this cancer ~ Primary Peritoneal Carcinoma ~ is very rare and very deadly. I know that the possibility of recurrence is very high. But at the same time, my doctor wanted me to focus on the fact that there are those who are cured after the first round of Chemo. And she wanted me to be in that cured minority ~ and I wanted to be there, too!
But, I wasn’t.
I had that first recurrence and the subsequent chemotherapy with remarkable results though. I have to say that I am looking forward to my next conversation with my doctor. I will be asking her the probability of my now having a cure after this last go around of chemo. Why would I even think of asking that question? It is because of the way that I am feeling. After all of this chemo ~ 29, I think~ I am feeling very well. I have a lot of energy – more than I had last time. Yes, I get very tired easily, but in general, I feel much better than I have felt in years! How can that be, I wonder? The only answer I have is that possibility this last round of chemo killed many more cancer cells than it had before. And consequently, my body is not as dragged down as it had been.
Nowadays, I still find that I must pace myself in order to prevent extreme fatigue, but my strength is steadily increasing. Not on a daily basis, but certainly weekly. The effects of the chemotherapy are cumulative and so every time I have chemo, I will experience more fatigue and more chemo brain. The longer that I am off of chemo, those side effects will diminish and I will eventually return to my normal self… but in the meantime….
December 10, 2010
Great News!
Thursday, December 9, 2010
I am sitting in the chemo room finishing up my LAST CHEMO!!!!!
When my son & I came in to see the doctor today we were prepared to be told that I would be starting on an alternative therapy of Avastin in 3 weeks. I think the prospect of on an ongoing open-ended therapy contributed to my depression these last three weeks.
But today, the doctor said that he thinks that this is all I need right now!!!!! Now I will have hopefully at least 6 months of feeling good enough to travel before my next recurrence… It will take me several weeks to recover from this round of poison, but then I should be good to go!!! I am so looking forward to feeling good again.
Thank you all for all of your prayers
Looks like a happy Christmas for us!!!!
December 7, 2010
Avastin
At my last doctors appointment, my doctor told me that he wants to start me on another drug. This drug is Avastin which is the name brand for Bevacizumab. This is an angiogenesis drug. That simply means that this drug cuts off the blood supply to the cancer tumors. Cancer needs a blood supply to grow and this drug will help to prevent that from happening.
Since my CA-125 increases at a rapid rate when my cancer returns and since my cancer responds very well to the carboplatin, he thinks that I’ll have an excellent response to the Avastin and that this may prevent me from having a recurrence so soon.
We will get more information at my next appointment on Thursday.
November 19, 2010
Third Chemo
I had chemo yesterday and I’ll be writing a little update for you in the next several days. I’m pretty tired right now and there is a lot to tell…. all good! How’s that for a teaser???!!!
Thank you for your continued prayers.
October 31, 2010
Too Sick for Trick-or-Treaters
Portland Firefly had Chemo again on Thursday and usually days 3 & 4 are the worst for experiencing side-effects. This week is no exception.
I have been fighting down the nausea and taking my prescribed anti-nausea meds. They work fine except they make me very sleepy and all I want to do is nap the day & night away! I have lots to share with you, but dog-gone-it, I’m just too sleepy to concentrate and write much more than this….
It’s all I can do to fight down the ever present nausea. I’m even too ill to open the door and pass out treats to my cute neighbor kids…..
October 28, 2010
Second Chemo Today
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…..
October 14, 2010
CA-125 Update 10/10
Hi!
I think that most of you know that Portland Firefly has had a little setback. Last month, my CA-125 was at 18. Then two weeks ago it skyrocketed to 265. Normal is 30-35 or below. One week later, just before I restarted Chemotherapy, it had made another amazing jump to 444 in only one week. So this is serious in that my cancer is growing so quickly . But the good side of that is that Chemotherapy works best when the cancer is actively growing. And actively growing, it is.
So I had my first chemo of this second go-around last week and was given only one drug – the Carboplatin. Portland Firefly had a lot of side effects from the other drug ~ Taxol ~ so my doctor opted for just the one drug this time. The side effects are minimal ~ still there ~ but not as severe as I experienced before.
In another few weeks , I’ll have a blood test and then we will have a better idea of how this treatment will proceed.
There are many women who have several recurrences of Ovarian Cancer and continue to live with treatment for a very long time. Many years. Primary Peritoneal Carcinoma is little bit more difficult because of the initial late stage diagnosis, yet is still very treatable. There are many new drugs coming available and I have only just begun to be treated with two of them.
Yes, I felt as though the wind was knocked out of my sails ~ or that I had been hit hard in the chest ~ when I read that my CA-125 had jumped to 444 in 5 weeks, but I am still optimistic for several reasons.
#1, I am not as sick as when I was first diagnosed in March/09.
#2, I am in better overall health.
#3, there are many options available to me.
#4, I have a loving family and good support system.
#5, I have confidence in my Doctor.
#6, I had a remarkable response previously and expect the same this time.
But, please keep Portland Firefly right there at the top of your prayer list, please. Thank you.
October 5, 2010
Here We Go Again!
Just to recap for you, I had a CA 125 blood test drawn last week just before I left for my friends Funeral in California. My prior results were 12 14 12 14 14 18 . Normal is 30-35 or below. My Tuesday result shows my CA level to be at 265, which confirmed my personal suspicions, as I have been feeling ’symptomatic’ for several months.
I just wanted to let you know that I had a CT scan done yesterday and expected there to be ascites (fluid) but there was none reported. That’s good news, but my abdomen has been gurgling for the last week! And I thought that it might have to be drained again, but it looks like that is not necessary.
At my upcoming doctors appointment, we will be getting the complete CT scan report. I completely expect to be restarting Chemo that morning as well.
I am feeling well and will continue to do the things that I enjoy and have planned to do ~ not only this week ~ but in the months to come. Please gently encourage me to go for daily walks as I have started doing that on my own and I think it does energize me.
For those of you who have seen me recently, I do love my cute curly hair and I’ll be sad to see it go in the trash. But I did stop by the cancer center this morning and I picked up some more head coverings! Like I needed more!
I’m going to be just fine ~ this is just a little setback that we can get through.
I still have a lot of traveling to do yet!! Let’s see ~ there’s the Grand Canyon, Hawaii, Israel, Petra, Egypt, Morocco, Greece & Italy ~ all calling my name! And I want to make a special trip to Disneyland with the Light of my Life and his Parents and Aunt!
And don’t forget my two books that I have to finish. “Tie One On” about how to tie scarves and turbans is almost ready to be printed. “How Can I Have Ovarian Cancer? I Don’t Have Any Ovaries!” still has quite a way to go, but at least I have the format in my mind and much of it is written.
I know that you will all be keeping me in your prayers and I am thanking you in advance for that kindness.
Thank you all for being such loving friends and caring family.
September 8, 2010
I Cheat at Solitaire
I like to play some card games on the computer and I have gotten pretty good at some of them…. but I have also figured out how to ‘manipulate the cards’ if needed so that I can win. Some may call that cheating. I personally don’t care what you call it… I do it and I win. So there!
But in the ‘game’ of life… (aha… here comes Introspective Firefly), especially when it comes to fighting Cancer … there is no cheating or ‘manipulating the cards’ . We must play the hand that we are delt. Some play it poorly, some play it vigorously, some play it slyly, some play it with elegance and grace.
Hopefully I am playing it with elegance and grace.
I am now in the ‘big time tournament’.
August 31, 2010
Six Month Check-up
Last Wednesday, I had my Doctor’s appointment. It was six months since my last Chemotherapy on February 22, 2010. This six-month appointment was important for several reasons.
If my CA-125 levels remain stable than that means that if I ever need to have Chemo again, then I will be able to have the same drugs that I had before (Carbo/ Taxol). It means that my cancer is what is termed ‘platinum sensitive’. That simply means that my cancer does not like platinum and that the platinum kills the cancer. It is a good thing to be ‘platinum sensitive’.
My cancer ~ Primary Peritoneal Carcinoma~ has an extremely high rate of reoccurrence.
In spite of what my beloved children want me to believe ~ the reality of this type of cancer is that it almost always returns. It is then treated as you would treat a chronic disease. And that means that I would have chemotherapy off and on over the years.
On Thursday, I found out that my CA 125 level has started to inch back up. It has been vacillating between 12 and 14 for about 6 months. Then last month, just before I left for Paris, it was 14 (when it should have been 12). Last week, my CA 125 level was 18. That is an increase of 4 points in one month and something to be watched over the next few months.
Actually I was not surprised in the rise in the CA 125 level because I have been much more tired than I felt I should be. And prior to my initial diagnosis fatigue was a powerful symptom for me.
Now what does all this mean? It means that I shall continue my life as I have been doing the last several months. I’ll have my CA125 level checked again in 2 months. We will, however, keep a watchful eye on those CA 125 levels and if they rise dramatically, I’ll go back on Chemo.
Guess I’d better enjoy my cute curly hair while I have it!!!
August 30, 2010
Chris II
Last week, I found out that my girlfriend Chris who also has Primary Peritoneal Carcinoma, is now receiving hospice care at home. She has had a lot of cancer-related problems over the last few months and even though I was not surprised to hear this news, it was still a shocking realization to me.
She and her husband, Steve are Catholic and have many friends who are priests, one of whom we went to school with. They have all been over to pray for and bless her.
She has removed herself from all tube feedings and is not wanting to see any visitors; so she is withdrawing from this world in preparation for her meeting with Jesus.
I wrote a post about her on July 21, 2010 as she has been an enormous encourager to me in my battle with Primary Peritoneal Carcinoma.
This is such emotional news for Portland Firefly to digest. I plan to attend her funeral service, whenever it will be.
August 20, 2010
Writer’s Break II
As I posted yesterday, I am taking a little break from writing. But… just as soon as I wrote those words, ideas started coming into my head…..
I thought that I would explain further (what I think is ) the real reason for my little break. It seems that there is so much going on inside my heart that I need time to sort things out. Yes, I think that is it…. I just need time to sort some of these emotions out in my heart and my brain.
I have been reading books about Ovarian Cancer as a sort of research for my book that I am writing. It seems that there is really not very many (what I consider) good books out there on this topic.
Most are personal stories about how the woman went to the doctor, had this test done with these results, then had Chemo, then got better, then got worse, describes all of the complications, then got better, then got worse, then eventually died. I found them boring. I didn’t even like Gilda Radner’s New York Times Best Seller book.
I do not want my book to be like any of those; and it will not. Those books were all about what happened to that person physically, not about the disease. I want my book to be a book of substance, helpful and uplifting and not about me, me, me. Yes, my book will have very personal moments, moments of insight and understanding that will hopefully lead the reader on a little journey.
And then I found one book that follows the stories of Ovarian Cancer patients (in the same support group I attend), but is written by someone who does not have Ovarian Cancer. I have found this book to be interesting as well as very powerful and well-written.
I know some of the women that she is writing about and this book makes me cry. It stirs up emotions that are deep in my being; it stirs up that choking ache deep inside the center of my chest….
You know the ache… the one that when you have it, you think you are having indigestion or a heart attack. I hope you know this ache; not because I want you to hurt, but because this deep ache, this deep wellspring of emotion shows that our emotions are still working. And that means that we are alive!
This book is also thought-provoking and Portland Firefly’s Chemo brain needs time to digest all that she has been reading. The assimilation process just takes time…. Time that is needed for those thoughts to roll around in my brain while I do other things. Time for my emotions to soften from the stoicism that has been there these last 18 months. Time to gather my thoughts about my life and where it is going; a big change from the ‘high-powered survival mode” that I have been in since March 2009.
Yes, Portland Firefly is alive! A year and a half ago, we were not sure that I’d be alive today. And not only am I alive, I am feeling good and gaining energy weekly. I need time to process this….
And so…. I’ll resume writing in a week or so and I promise you… you will love what is coming up…..
With Love to my readers…. Portland Firefly
