Then the wind blows and some of the petite pink petals flutter to the ground.  My freshly mowed lawn looks like it has pink snow on it!  When I open the front door to walk to the mailbox, I am overcome with the soft,sensual scent of these beautiful blossoms.  It just smells so good outside!!! I take a deep breath and then another one and then decide I need to share this experience with my readers.

And just in time for May Day!

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!

http://spaceflight1.nasa.gov/realdata/sightings/cities/view.cgi?country=United_States&region=Oregon&city=Portland

The second column is the number of minutes the ISS will be visable; the third column is the maximum elevation;  the fourth column is where you should look as it comes into view; the last column is where it will exit your view.

In other words, the first sighting will begin at 9:26pm;  last 3 minutes; will be no higher than 53 degrees; will ‘pop’ into view at 33 degrees in the NW sky; will exit your view at 26 degrees E.  It might be helpful to remember that 90 degrees would be straight up.

Have fun!!!

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!

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…

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.

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!

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.

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.

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!

And today I am somehow climbing out of the pit of darkness…..

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.

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.

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.

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.

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.

I entered the tire inflation bay at the tire store and the attendant was right there waiting for me.  When I mentioned the tire he said that yes it looked low.  Well!!! It was down to 13 pounds of pressure from 35!   I would say it was low!  I sent a blessing to the gas station attendant because I would not have noticed it for many more days.  And I probably would have had a flat tire in my garage one morning! Anyway the tire attendant wanted to fix the tire right then and there.  I didn’t want to get out of the car and I really didn’t feel like waiting in the waiting room for any length of time at all.  I told him I just had chemo and didn’t really feel well and he said that it would take 10 minutes, 15 at the most and I could stay in my car.

What a salesman he was.  Humnmmmm ….  10 minutes (I bet it will be at least 15) and Mercedes and I can relax in the car without breathing in the obnoxious tire fumes that permeate the waiting room. And the tire will be fixed and safe and I will not have to make another special trip over to the tire store.  I said Ok and reclined my car seat for a little rest and he got to work.  I noticed the time as I turned off the engine; it was 4:02 pm.  He hustled and bustled around and it was obvious that he knew exactly what he was doing and I felt that I was in good hands with this young tire employee.  I closed my eyes for a few minutes then decided to make a short phone call.  Soon I noticed that he was about ready to put the tire back on my car.  I wonder what time it is?  4:10 pm!  It took him another few minutes to balance and reinstall the tire and tighten up all of the lug nuts.  4:12 pm. Exactly!!!

He had the cutest smile when I told him it took exactly 10 minutes!!!  And now he has a 10 minute story to tell for the rest of his life!

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.

Well, I finally finished my grand-daughter’s afghan and today was delivery day!  Hers is a soft green and all one color with the pattern of ‘bobbles and crosses’.  The bobbles are like little puffs and are so girly that I made the edging out of them.  It is a little bit bigger than a crib, so it will be the perfect size for a little girl to snuggle up into. She is only 9 months old now.

But the best part was the delivery!   I carefully folded it up and wrapped it up in some brightly colored paper and tied it with a pretty purple bow.  I set in front of her while she was in her highchair.  She knew it was for her!  She gave me the sweetest look as if to say, “For Me?  Wow! This is fun!”  Then she reached right away for the purple ribbon and started to pull it  (I have brilliant grandchildren!)  as though she opens presents everyday! Well, she did need a little help as her 4-year-old Brother remarked…. “I think she needs some help.”
And with that, the ribbon was off the package!

Next came the best part. The paper!  I made a little tear in a corner to ‘start’ it for her and she had so much fun ripping it to shreds and tasting it and throwing it on the floor! And then she saw the afghan…. She looked up at me and gave me the biggest, sweetest smile as if to say “Thank You, Nonni!   I love it!”   That made the 6 inches I had to rip out and redo worth every extra stitch.

There is no medicine so wonderful as the seeing the face of your grandchild smile up at you!

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.

I’ll get through this… it’s just a phase, but  there it is and I am owning up to it!

So today, there she is napping away.  I have heard her make little sounds and little barks and growls while sleeping so I know that she is dreaming.  But today she did something I have never heard or seen.  Picture this…. my little white ball of fluff is all curled up in her little bed sound asleep and there is no sound but the sound of her tail wagging as it hits the floor repeatedly!  Then the wagging gets faster, then slows, then gets faster again!   She is such a happy little doggie!  She even has happy dreams!