February 26, 2012
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
Well, it looks like my CA -12 went up. This is the first time this has happened… no response to the chemo.
I did not have Chemo yesterday as scheduled… we are revisiting the drug cocktail that I’ll be receiving.
1/26/12 142 I was on Carboplatin those 2 cycles.
2/23/12 my CA-125 has jumped to 529. After 50 cc of DOXIL one month ago.
I do know that sometimes the CA-125 doesn’t necessarily come down for a few months on Doxil, but that is a pretty big jump up as opposed to staying about the same.
Right now, I do not know how I am feeling… I need time to process and talk to the doctor.
February 24, 2012
Today I go and see my Doctor and get my Chemo. I was notified yesterday that my dose of DOXIL had indeed arrived and was waiting for me! This is great news for me. It is helpful for me to know ahead of time that it is there, because there are some preparations that I have to make before I receive the DOXIL infusion.
I cannot vacuum, cannot do laundry, cannot chop/prepare foods, cannot wash dishes, and I cannot wear any tight clothes. There are also food restrictions: no tomatoes, no citrus, no spicy foods. So my days prior to the infusion are busy with house cleaning and shopping and meal prep. I also cannot do any crocheting and so I have a supply of interesting travelogues to watch! And for two days after the infusion, I have to soak my hands and feet in ice water to prevent the blistering side-effects! So no typing!
I had minimal side effects from the last dose, so prayers for the same again this time.
February 23, 2012
Bras are the most needed, yet least donated item of clothing for women. SOMA is collecting and distributing women’s bras in partnership with NNEDV – the National Network to End Domestic Violence. Simply bring new or gently worn bras to any Soma Intimates Boutique by this Sunday, February 26, 2012.
If you are in the Portland area, there is a store at Washington Square Mall. www.SOMA.com
February 21, 2012
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.
So, I’ll just have to wait and see if I get more of my life-saving drug or not!
February 14, 2012
February 8, 2012
Ignite Portland 10 kicks off tomorrow night –Thursday — Feb 9, 2012 at the Bagdad Theatre on Hawthorn and 37th at 7:00 pm. Door open at 5:45pm.
February 7, 2012
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.
February 2, 2012
Ignite Portland 10 is one week from today.
Ignite Portland 10 is upon us! On Thursday evening of February 9th we will be congregating at the Bagdad Theater for some great company and stellar talks. Admission is free, of course, and you won’t want to miss this one!
If this is your first IgnitePDX or even your tenth (whoo! double digits!), we’re sure you will still want some guidelines for how to make it a great night:
- Doors Open at 5:00 PM for those with OFB donations. We are partnering this year with the Oregon Food Bank to get some donations out to those in need. Bring a can or two and get in early!
- Doors Open at 5:45 PM for everyone else – as usual, No Ticket Needed. As of IP7, we’ve done away with the ticket system. Too complicated. Just come on down, and we’ll let people in until the Fire Marshall says we can’t anymore.
- Overflow next door at Back Stage. If you’d rather take in the proceedings in the Back Stage bar environment next door to the Bagdad, we’ll be showing the talks on the big projection screen there.
- Live Video Stream. As has become tradition, we’ll have a live video stream of the night’s proceedings. Come back here to IgnitePortland.com on the night of and you’ll see a stream where you can watch LIVE and hang out in the chat with the other cool kids who are watching. This is for our friends who couldn’t make it in person to the Bagdad, and for any Ignite PDX fans out of town.
- Please, No Seat Saving. We know you’re excited to watch the show with all your friends. And maybe they couldn’t make it down as early as you did. But it’s not fair for one person to squat on a whole bunch of seats with coats, etc. so their friends can saunter in late. Please don’t be a jerk about this. We’ll have ushers milling about to help you remember. We want everyone to have a fair chance at getting a good seat. It’s fine to hold a seat for yourself, so you can get up and order drinks/food, but if your friends come a little later, they’ll have to find their own seats. It’s only fair. Thanks for understanding.
- Keep the Beer/Food Lines Moving. One of the awesome things about the Badgad Theater is you can your favorite beverage with a slice of pizza, a burger, or some cajun tots in the lobby, and have ‘em bring it right to you inside the theater! Please do order as much food and drink as you’d like. Just try to keep the lines moving smoothly. Doors open at 5:00 PM, but the show doesn’t start until 7PM. The smart patrons will get themselves some food before the show at a nearby restaurant (hint hint).
February 1, 2012
The last time I put gas in my car, the attendant told me that I might want to have my left rear tire checked as it looked low to him. Well, I had just had my tire inflation checked a few days prior, but when I looked at it, I realized that he was right. It did look low. Finally yesterday, I felt well enough to get dressed and drive out for some groceries and water and , oh yes, let’s get that tire inflated while I’m out and about!
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!