May 4, 2012
Super Moon ~ May 5, 2012
Saturday, May 5th, 2012 is much more than Cinco de Mayo; it is the night of the SUPER MOON!!!
“What is a Super Moon?”, you ask. Well, it is the night of the full moon when the moon is nearest the earth and the brightest that it will be all year-long.
So be sure to head outside on Saturday night and look to the East – low on the horizon - at 8:24 pm PDT (11:24 pm EDT).
May 2, 2012
National Day of Prayer 2012
Tomorrow, Thursday, May 3, 2012 is our national Day of Prayer. Some local churches are providing a place for anyone in the community to come together and pray for our Nation and our leaders.
April 28, 2012
It Smells So Good Outside!
Spring has finally arrived here in the Portland area! There are many flowering crab apple trees on my street and all of them are now in bloom.The heavily laden branches are bending with the weight of the fat, fresh blossoms, especially after a little more weight added by a spring shower!
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!
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 22, 2012
International Space Station Sightings
The following are the times that Portlanders can view the ISS.
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!!!
| Sun Apr 22/09:26 PM |
3 |
53 |
33 above NW | 26 above E |
| Sun Apr 22/11:01 PM |
< 1 |
13 |
11 above W | 13 above W |
| Mon Apr 23/08:32 PM |
2 |
24 |
24 above ENE | 10 above E |
| Mon Apr 23/10:05 PM |
2 |
49 |
18 above WNW | 49 above SW |
| Tue Apr 24/09:10 PM |
3 |
86 |
36 above WNW | 19 above ESE |
| Tue Apr 24/10:45 PM |
< 1 |
12 |
10 above WSW | 12 above WSW |
| Wed Apr 25/09:49 PM |
3 |
23 |
11 above W | 24 above SSW |
| Thu Apr 26/08:55 PM |
4 |
50 |
32 above W | 12 above SE |
| Fri Apr 27/09:35 PM |
3 |
14 |
10 above WSW | 10 above SSW |
| Sat Apr 28/08:41 PM |
4 |
26 |
20 above WSW | 11 above SSE |
Happy Earth Day
This year ~ support our Earth. How? Well, you can do one thing that conserves energy or promotes ‘greenness’.
Some Suggestions:
Stop using the plastic bags at the grocery store ~ take you own reusable bags ~ many are now washable.
Consolidate your driving, or try walking to one place to which you would normally drive.
Use reusable coffee mugs instead of paper ones.
Use reusable water bottles. Stop buying cases of bottled water at Costco and instead purchase a Zero Water or Britta filter and fill your own reusable (BPA free) containers.
These are just a few suggestions…
Try making one small change this year…..
Help out our Beautiful Earth!!!
Happy Earth Day!
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 20, 2012
First Day of Spring?
The calendar says it is the first day of Spring; but the weather outside is almost frightful!
It is freezing and raining and some plces in the city even had snow this morning!!
UGH!
March 16, 2012
Happy St. Patrick’s Day
May the road rise to meet you and may the wind be at your back,
May God’s face shine upon you and and May He hold you in the hollow of his hand.”
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 9, 2012
Daylight Saving Time~Again
Daylight Savings Time is yet again upon us on Saturday night. I have just had it with all this time change.
If the people of America can get the major banks to reverse their stand on ATM fees, why can’t we get Daylight Savings Time stopped once and for all? I do not know of one person who actually likes this twice a year schedule upset. In fact, several cities and even the beautiful state of Hawaii refuse to succumb to this outdated ritual. The reasons for its inception are no longer valid.
People of America Unite! Write your congressman and declare that we want Daylight Savings Time to cease forever more!
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 23, 2012
Donate your old Bras
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
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 14, 2012
Happy Valentine’s Day!
February 8, 2012
Ignite Portland 10
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.
