The holidays

Merry Christmas everyone.  This is the time of year for joy, love, forgiveness and peace.  This Christmas season is so different from last year, and I'm glad.  I get to enjoy shopping.  I also get to reflect more on God's blessings.  My online ovarian cancer group lost another sister today, so sad.  The grace is that she is at peace, and no longer in pain.

Everyday we lose a dear sister, it's just so difficult to understand sometimes.  I feel a thousand emotions all the time.

For me, I am really wanting to make the most of it.  I'm putting more thought into my little gifts and really really praying that everyone just has fun.  I want to hear more laughter than ever before.  I am so lucky that I have such an amazing family.  By the way, I was happy to send Christmas cards to my surgeon, oncologist and favorite chemo nurse.  I didn't get to do that last year, I was too out of it, really.  If you know someone on Chemo, offer to help them with cards and thank yous.........it will really help them.

I have four doctors appointments in the next 5 day run.  I will find out tomorrow the results of my latest CA125. I will also see my psychologist on Friday for the first time.  Monday I get my hearing checked and have another appointment with vocational rehab.  I'm very fortunate to have these opportunities.

I finally got my new glasses, which I really needed. I couldn't read a book without a magnifying glass....sigh.

I'll be posting more as we get closer to Christmas and fill you in on the results of my appointments.

My main message today is that we only have a few days left before we celebrate the birth of our Lord Jesus Christ.  Everyone in the world needs to have a chance to smile and feel true love.  Jesus does love us all, and allow Him to comfort you during this time of great celebration.

God's Blessings to all!

Doctors can be real #1 idiots

I belong to an online support group for people effected by ovarian cancer.  Members consist of patients, caregivers, incognito health professionals, friends, spouses, family etc.  Most of the members are female patients.  Its fairly common that at some point you learn that many women on the site mention that their ovarian cancer was completely missed altogether or just very difficult to diagnose.  I have a new friend who had the worst gynecologist ever it seems.

Doc is a friend of her husband, and I think that because of that, he didn't show this woman the respect she deserved.  She had been going back and forth and back and forth to him, literally telling him that her symptoms sounded like ovarian cancer and he refused to do a CA125 blood test.

He kept telling her it was menapause, or it was fibroids, or it was this or that or whatever.  He did the same to her that my gyno did to me.  He said she was too young to have ovarian cancer and laughed it off.

I was fuming mad when  I had read it, and wrote back a little about myself and our common experiences.  She "friended" me and we e-mailed a little more.

MY FRUSTRATION IS THAT IF A WOMAN SAYS TO HER GYNOCOLOGIST OR PCP THAT SHE WANTS A CA125, AND SHE HAS SOME SIGNS OF OVARIAN CANCER, WHO IS THIS DOC TO DENY THE TEST??????????????  WHO IS HE/SHE TO PLAY GOD?????????

If I would have know the symptoms of ovarian cancer before I was diagnosed, I would have paid for the blood test myself, screw my doctor!  I'm totally serious.  Every woman should have the right to have this test.  I KNOW THE CA125 IS NOT TOTALLY RELIABLE, BUT IF YOU HAVE OTHER SYMPTOMS, THE TEST SHOULD BE DONE, PERIOD.

This could literally save a life!  Do they teach medical students about ovarian cancer?  Have they just given up on us?  Why are they so complacent to just let it get to stage IIIC?  My friends doctor kept telling her it was pointless anyway because if they found it later it would be too late anyway!

What an ass.

I try not to use profanity, but really.  She could have had early stage ovarian cancer treated and not live her remaining life in fear.  Instead she was treated as an advanced stage patient, and even being NED/remission, her chances of recurrence are incredibly high.  So are mine.  We think about it all the time.

I don't want to live the rest of my life worrying about recurrence, and I am getting help in this area.  I want to be happy.  I want to be joyous and loving and happy and fun to be around.

At the same time I want to create a huge punching bag that has all the names of the docs who have negligently allowed women to advance into later stages of ovarian cancer, and give all those women a chance to pounce!

Thats the problem.  Underneath all this healing simmers ever so slowly a burning anger that this could have been prevented.  I have forgiven almost all of my doctors, except for two.  I'm close to forgiving them.

I'm hoping to finish that by Christmas.  The docs are just plain idiots, and really don't listen to their patients.  We can't continue to allow this to keep happening.  We just cant.

Be Love and God Bless

ERT and my naturopath

Hello all,

I read one of the articles from the previous blog's link, about estrogen replacement therapy.  Please take time to read.  I am so happy that I discontinued my estradiol patch about a month or so ago.  I just had this feeling inside that I needed to stop.  Because I am also BRCA 1 mutation positive, eventually I may take Tamoxafen to help decrease the chances of breast cancer.  You cannot take Tamoxafen while taking estrogen.  Plus, according to the article, estrogen can increase the risk of recurrence and also increase the speed of destruction.

That's just plain bad news.

So I am having hot flashes every hour or so, and it's not so fun.  The only upside is that the overall temperature is "cold" and I can just go outside for a minute and cool off.  Hopefully this will pass sooner than later, but it's nothing compared to a recurrence.  I'll deal, no biggie.

My ND (Naturpathic Doctor) is fantastic, he's just what I needed on my team right now.  I think everyone should see him.  Prior to seeing him, I had to complete a detailed questionnaire, as usual.  But it asked really good questions about my habits, body and what was important to me.  Wow.

In his office there were some awards.  He sits looking out onto the water in Puget Sound, nice.  The staff is all smiley and friendly.  Perfect.

After answering 20 or 30 very specific questions about anything you can imagine, he wrote out a very simple plan to get my GI tract back in check.  Yippie.  I do have 4 new supplements that range from enzymes to multivitamins.  I also must eat several cups of fruit ( cantaloupe or pears etc) per day.  The fruit is for fiber.  One of the supplements will help to grease my GI tract to help things move along more smoothly.

The most important thing was to increase my exercise.  He insists that I move briskly for 20 minutes every day.................aaagh.  He prefers that I walk, but any really fast moving that gets my heart pumping is what he wants.  I didn't ask "why" because I know why.  I need to flush out toxins and increase my endurance.

I have other issues to face but he just wants to deal with digestion for now.  That is what I want to do.  He affirmed that healthy absorption of nutrients can help improve my immune function, which would hopefully fend off disease.

Funny thing, he also wants me to over-chew my food.  He said "chew your soup".  This is because the salivary enzymes are a critical part of the digestion process.  I've always been a slow eater, so no problem.  I just need to be careful I don't look like a cow chewing her cud......ha ha.

I am to see him again in late January.

I don't want to invest all my hope in this area of my treatment, but it's so so so so so important to me that I do whatever I can do to help myself be healthy.  I can control what I eat, how I eat, etc. I can't control my bone marrow production, you know what I mean?

AND.....being full of energy, feeling good, appearing healthy are all part of returning to being a productive member of the working population.

It just really gets me down that I'm not healthy sometimes, healthy people have no idea how lucky they are.

If I were healthy, I could do anything I wanted.  I could climb rocks, I could be a waitress to earn extra money.............but being like I am, my options have narrowed.  So I will do my best to see the glory and sunshine, because I do know I'm meant for something.

I also was able to go to church tonight for a mass to celebrate Virgin Mary. Last year I was not able to go. It felt so nice to be able to go to church.....................so nice.

Be Love and God Bless

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Research-Report-2010.html?soid=1102150261756&aid=qjObaaPCPzk

Hello everyone. Here's a link to some of the latest research on ovarian cancer. Later I will blog about my wonderful trip to the naturopathic doctor.

Be well

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Research-Report-2010.html?soid=1102150261756&aid=qjObaaPCPzk

RIP Elizabeth Edwards

Rest in Peace dear Elizabeth.  One day the cure for cancer will be allowed in the hands of oncologists who want to save lives.  You are a beacon of hope and love, grace and strength.

I believe that stress can cause cancer.  I say this only in that you endured much stress the last few years, and your body just couldn't take it any more.  I am so sorry.  God is with you now.

Elizabeth Edwards' illness worsens - latimes.com

Dear Elizabeth,

You have been an inspiration to me and many other women. So strong and brave. I am so sorry to hear the news that you are no longer receiving treatment for your breast cancer. I pray that God's angels carry your pain away, and that this precious moment in time with those you love is sheltered from fear and cold. God's Blessings to you.

Elizabeth Edwards' illness worsens - latimes.com

ASA : History of Medical Cannabis...what do you think?

Hello from Seattle,

This information about the history of Medical Cannabis is quite interesting. I have not made up my mind yet on the whole mowi-wowi thing. But it does seem that there is enough evidence existing that indicates medical marijuana can be helpful to some cancer patients. I think if my last hope were medical marijuana, I'd have no choice but to try it. When your life is literally on the line, suddenly your boundaries change, your willingness increases and you think beyond the ordinary.

I pray that whatever is used to treat all cancer patients pushes them into full remission, but that is not the case. I hold no judgement or opinion on people who use medical marijuana. I just pray that if it's used, that it works!

Be Love and God Bless

ASA : History of Medical Cannabis

Someone to talk with

Finally today I received a call from the psychologists office.  Yay.  I need to address my anxiety about being in limbo land.  For the last two days I have woken up at 5am and tossed and turned, falling back asleep around 8.  I was too tired to get out of be at 5am.  Unfortunately I also then proceeded to sleep until 11:30 or noon.

Currently I need to take Paxil and Lorazepam.  Once again, like clockwork, I had a wave of nausea and anxiety flow through me around 2:30 today.  I just don't understand it.  I literally walk in circles, not knowing what to do next, feeling like I'm going to throw up any second.  But after I take my Lorazepam, it calms in about 20 minutes or so.

I'll see the psychologist in the next week or so.

I was able to get an appointment with a Naturopathic Doctor for next week, just under the wire in terms of insurance coverage.  (January is just around the corner and I have a high deductible).

I don't have that Christmas spirit yet, but hope to soon.  Maybe mom and I can get our tree up soon, that always helps.  Little extra money makes shopping hard.  All we're doing this year is buying for the kids, it's just too much.  I'd love to be able to pay for a big family getaway, so we can all get some relief from our ills.

Peace and God Bless

Progress with resume, still boxed in

I feel like there is a screw at the bottom of my feet, and I'm spinning in circles, locking myself down.  It's just a terrible feeling.

Yesterday I went to get my hand splint/fitting for my RA, and for about an hour prior to my leaving, I was anxious, nauseous, and had abdominal pain.  I took a lorazapam and 2 colace, had some yogurt and just sat still.  This sense of panic/nausea consumes me every day around the same time (between 2 and 3pm).  How will I manage this when I get some work?  I worry that a recurrence may be under way, but then worry I worry too much.  HA

Made it home fine, splints are awkward, but necessary.

I now have my printer and have updated my resume.  It's sitting here with a huge gap, begging the question "what did you do since July of 2009?"  I have a feeling that my only good strategy will be to take a strong, bold approach, and tell them I won a battle with cancer and now I'm back.  They don't need to know that there's 80% chance it will return, heck I probably didn't need to know that either.

I had nightmares last night, woke up at 5am, fell asleep again at 8am and woke up at noon. Not good overall.  My abdomen is tight, and I feel like lead.  So I managed to review some more web based information about "ticket to work" and found nothing helpful. 

All I really need is a part time job in my neighborhood, that is not stressful or heavy duty, for now.  I feel like I can't move from this couch and "get out there". 

I was supposed to go to the cancer center to receive holy communion today, because I missed church this past weekend.  The cancer center offers communion on first and third wednesdays of each month.  I'm feeling bad, totally incapable, for missing that.

My joints hurt more today too.......................I wish Mom could have a beautiful retreat and get her "artist on" again, and I wish I could go on a retreat to get my "life on" again. 

So if you are in remission and looking for a new job, I feel for you.  The resources are limited.  Hang in there.....one day at a time, I guess.

I guess today I am blabbering, because that is how I feel today.  Need umph!

Be Love and God Bless

That Girl...tales from the edge: Allowing myself the luxury...

Perspectives from a woman who is BRCA2 mutation positive, electing a prophylactic mastectomy.


That Girl...tales from the edge: Allowing myself the luxury...: "It is always interesting to talk with someone who doesn't quite know my full story...I will always feel the need to quickly clarify I never ..."

Blessings for this Thanksgiving weekend

It's the Friday after, and I am so happy.  I was able to eat portions of all the meal and not hurt too much today.  The hardest part about today is the withdrawl from spending time with mom, Mandy, Patrick, Laria and Addie.  We shared laughter and just seemed to have a good time, so unlike last year.  Not to dwell on the past, but from what I can remember about last year, I felt muted and was in a lot of pain.  I was in the throws of chemo, with one hospitalized treatment scheduled for the day after Thanksgiving.

This year, the time spent with family was fully enjoyed.  My poor little niece was sick, but she seemed to be coping well enough.  Those girls are full of so much enthusiasm and thirsty to please, smile and learn.

We all chipped in to make the dinner, and it was scrumptious.  I am truly grateful to God for giving me this day and another chance to enjoy the holiday season.

My printer arrived, so this weekend I'll set it up.  Next week is time to get back with voc rehab, they never contacted me.

I spent most of the day thinking about what I will leave behind for people to remember me by, whenever my time comes.  Not in a depressing sad way, but in an inspirational way.  I don't want people to remember me as a weak person who couldn't get back on her feet...........but what do I choose to do here?

I was thinking that as an Aunt, I have a great opportunity to show so much more love, support, participation, and examples. I just adore all my nieces and nephew so much.

I need them to see that I can be normal, so I do need to get back to work on some level.  I also love being here with mom.  I really do.  She does not need me here, I need her more still.  I am totally afraid that if I move out, I will get really depressed and lonely.  What if something happens to her?  I get a little overly worried about those kinds of things if I think too far ahead.  That's why it's better for me to make short term plans right now.......like a week or so at a time.

Want to go with the family to see the Picasso Exhibition.  AND I need to get a turtle in the kiln (over the summer my brother's children and he came to visit and the children made a turtle out of clay).  In Seattle, it's no easy task to get clay fired, but I must do it..........

Well, lots of little things to take care of and praying for little Laria to be better soon.  Oh and also my Aunt Kathy had good test results with her biopsy.  We are all so grateful to that and thank you for your prayers.

Be well and God Bless.  Happy Thanksgiving.

Running for her — and for thousands - latimes.com

Running for her — and for thousands - latimes.com

CA 125 test and neutropenia

Hello all from Seattle.  Rainy and cold, per usual for this time of year.  Have any of you ever been so overwhelmed that you felt suicidal?  I don't feel suicidal, but one of my online support groups has a member who knows someone who is, and she has cancer, and it's in remission ( per discussion).  This situation was very upsetting to some peope in the group, and I don't think the suicidal person should be attacked.

How do you feel about a cancer patient being suicidal?  Do you feel compassion?  Do you feel anger towards her for not fighting hard to live her life to the fullest?  Hmmmmmmmmmmm   Something to think about.

Had a blood test (monthly test) at the cancer center today.  I do not yet know the results of the golden CA125, but hopefully will have a number on Monday.  Cholesterol is great but white counts dangerously low.  It's .5.  Ideally it would be 4.  My condition is a status such that if I get a fever I must go to the emergency room, immediately.  This problem will be with me for the rest of my life.  I seem to be destined to live as "bubble girl".

This may partly explain why I've been sleeping 12 hours per day, solid sleep.

Thanks to God and my doctor and my insurance, I will get a neulasta shot tomorrow and I'll be OK for a few months.  In a few months, the number will bottom out again, and I'll have to take another $7K shot.

How do you feel about my neulasta costing $7K?

I may need to do some fundraisning next year...........Have a great weekend.  Please also pray for my Aunt Kathy.  She had a breast biopsy today.  Let's hope the lump is nothing.  I'll keep you posted.

God Bless and Be Love

Denise

"Wit" starring Emma Thompson

Oh how I wish I would have seen this movie several years ago.  It's about a woman going through the challenges of her life and stage IV ovarian cancer.  It is so well written and Emma's performance is spectacular.  It's hard to watch as someon who has struggled with cancer, but I am a better person for it.

Every woman should watch this movie, and I mean before they get cancer.  It helps one to see how subtle the signs can be yet missing them can be deadly.  Her life experiences come full circle in this emotional drama.

I am so happy to have seen this movie and am even more energized to find some way to be an advocate to improve the awareness of ovarian cancer.  I do not know where I fit yet.

I belong to an online support group for women with ovarian cancer.  The women are amazing angels.  We are all in different stages, some members are longtime survivors, some are caregivers, and some are newly diagnosed.  It's a place where we feel safe talking about sensitive problems and sharing our joys.

I also visited with a member of the Lance Armstrong Survivorship program this past Friday.  We are setting up a plan so I can get my lfe back together.  Everything from getting my hearing tested to setting another appointment with vocational counselors at the U of W.  I think the timing was good, I'm more energetic and feel more "ready" to add more tasks to my daily life.

Still lost as to meaning, but I can't wait for meaning to come to me, I have to find it.

Be Love and God Bless

Life and Death, and not in the abstract either