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!

But not without planning!!!   The night before I mapped out my route for the stores that I wanted to go to on Monday.  I then checked their store hours on-line.  Luckily for me, one store opened at 8:00 am and the other one opened at 9:00.  They were about 20 minutes away from each other, both near different major shopping malls.

With my plan in mind I went to sleep ~ clothes all ready to jump into early the day after Christmas.  My plan was to arrive at the first store as close to 8:00 am as I could possibly manage.  I wasn’t going to be unrealistic –I just wanted to get in and get out before the crowds and traffic started.

I woke up a little before 8:00 am… plan still in place, I quickly dressed, applied minimal makeup (I wasn’t going to see anyone I knew, right?) and put my tea in a togo cup and grabbed some yogurt to eat in the car.  At the first long light, I just enjoyed my yogurt and tea…. This is going well, I thought!  With almost no traffic, I arrived at the first store about 8:25.  Not bad.  There was no one in the returns line.  Yeah!  I returned one  coat and headed out the door.

Instead of backtracking the way I came, I headed out to get on the freeway from the other direction… and there was the other store I needed to go to!  I was going to drive another 20 minutes to make the returns to that store because I didn’t realize that there was another one RIGHT HERE!

Returns made and other shirts purchased, out the door to head on home.  And I even arrived home before the traffic started! I was tired… time for a time for a little nap before attending my dinner party.

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!

Merry Christmas and may you all have all of the Blessings and Joys of this Holy time of year.

Oh my goodness, what shall I wear for my interview?!!!!

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!

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!

But now it demanded my attention.  Still sleepy, I got the foot stool (had to find it first!)  and climbed up and opened the battery door of the smoke detector.  The battery crashed to the floor.  Good thing Puppy was still hiding under the bed, it would have knocked her out!   Now it will be silent, I thought, and I can go back to bed.  NO!  It keeps beeping until a well-charged battery is replaced.  Try doing that in the dark , half asleep.  Not fun. Maybe I should call the fire department and have them come and replace it?  No … I can do this… it will just take me some time…

And I did eventually – 2 batteries later – get the smoke detector working properly.  But by then, I was so wide awake that I didn’t want to go back to bed.  I just laid down for  few minutes and tried to coax Pup from her bed-cave.  Now that the ear hurting sound was gone, she was happy to jump up on the bed and give my tasty hand a few licks!

So much for sleeping in late today!!!!

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!!!

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!!!!

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.

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…

You are but a mist that appears for only a short while before it vanishes.  James 4:14

But we can always remember the mist and how we loved it while it was here.

If a patient is not cured (which I was not) then there is no such thing as remission for OC.  The term that is used is NED ~ No Evidence of Disease.

I have never been NED since my diagnosis. But I did find a different definition of NED that does fit my situation.

NED ~ Not Eligible to Die!
So I will hold on to NED for as long as I can!

Mercedes Frog Dog by Pdxfirefly

When is a dog a frog?  On Halloween!

When I arrived, there was no one else in the lobby and no one using the self-service machine.  Well, the machine was very slow and I was having trouble with the transaction.  A man arrived and stood behind me.  I wanted to have tracking on this package, but that didn’t come up as an option.  Meanwhile the man behind me starts making rude comments.  He continued making rude comments, bullying me the entire time I was trying to finish mailing my package.

He was wearing an US Marines baseball cap and due to the size of his paunch, my impression is that it has been several years since he was in that  branch of the military service.  Now you all know Portland Firefly is very patriotic and I greatly respect and honor the sacrifices that military families have made for our country.  BUT…. that does not give  anyone a sense of entitlement to be mean and rude to anyone just because he had to wait a few minutes for his turn.

I am not used to dealing with bullies, so it was several minutes (in fact I was on my way home) before I recognized his bad behavior as bullying.  How I feel for children who are bullied at school!