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

Holiday ornaments bring warmth to your heart

Weatherd Silo was created by my beautiful sister Mandy Behrens to bring back the "old ways' of living to our current times.  She is a gifted artist, dedicated to eco-friendly products that are beautiful and inspiring.

Here is a link to her etsy shop. Her handcrafted ornaments are unlike any others.  They make wonderful gifts for this holiday season.

http://www.etsy.com/shop/weatheredsilo

Normally I don't promote businesses on my site, but these are georgous.  More importantly, made by my sister.  My sister is a rock for me.  She is truly a beautiful person, inside and out. 

Yesterday I was graced with the opportunity to see my niece perform in a school assembly honoring our Veterans.  My niece sang like a lark, and it was just so fun to see all the lovely children singing and laughing.
My sister seemed so happy.

It made me wonder how my life would have been different if I could/would have had children.  I think I would have been a loving patient mom, but also nervous as heck.  I would probably be the true helicopter mom, never knowing when to let things be and run their course.

If some guy ever finds me attractive, compatable and interesting, maybe I'll get married.  I would love to marry someone who already had small children.  In case you hadn't read my whole story, I was told not to have children when I was 17 or 18.

My juvenile rheumatoid arthritis was so bad back then I couldn't even write, let alone carry a baby or raise a child.  So I never planned on a family.  That was a very depressing area of my life.

But now I can relish in the joy of my nieces and nephew for as long as God allows me to live.

I hope to send a post tomorrow about my visit with the Lance Armstrong survivor program today.  I am a little overwhelmed because I'm stuck, don't know how to envision my life.  When you don't know how long you have to live, your priorities line up well, but your resources may not.

So after probably confusing you, at the end of the day it was a great visit.  We do have a plan of action and I think I can manage it.  I'll fill you in on the next post.

God Bless and
Be Love

My hands, something different to talk about

Today I went for an evaluation by an Occupational Hand Therapist, to evaluate the need for hand splints.  The scheduler was kind enough to call my insurance company to verify that they pay part of the visit.  I don't think they cover prosthetic/splints though. 

Both wrists have worn away, have little range of motion, and limit my function.  My right (dominant) hand and wrist are worse than the left, more pain, less range and more ulnar deviation.  Ulnar deviation is where your fingers drift towards your pinky.  When this deformity becomes permanent, it's almost impossible to do simple daily tasks, (like buttoning a shirt, hold a glass, cut food). 

She measured me for splints to wear at night.  I told her I was needing to keep the expense down, and she agreed to order pre-fabricated splints as opposed to custom made splints.  We will start with just one splint for the right hand, and then progress to the left hand if all goes well on the right side.  If I ordered them myself , they'd cost around $50.  Let's see what the cost comes out to be once the facility tacks on their fees.

I mention this only because several years ago I was placed on home neck traction therapy due to slipped disc (car accident).  It was ridiculous because I had to spend several thousand dollars in CT scans and MRI, and see a neurosurgeon for them to finally figure out the right treatment.

Good God, I was in so much pain, it made me cry just to wash my hair.  So I did traction 5 times a day for a month.  Since I needed a second traction machine, (so I could use it on breaks at work), I ordered the second one online for $29.99.  The hospital charged me over $200 for the same thing!  I was peeved at the difference in charge to me.

Anyway, it was worth it.  After several months of home traction, my neck pain went away and has not returned.  I saved them in case my neck pain ever returns.

Today I'll take a guess and say that the OT clinic/facility will charge me $300 for the splint.  Let's hope I'm wrong, but I bet I'm not too far off.  I almost asked her if I could order it myself, I wish I would have now.  The OT was super nice and professional, which was a plus for me.

Well, I'm grateful for the opportunity to get an OT eval, so in the end it's all good. 

God Bless and Be Love

My foreign bodies

It was nice today to speak with a surgical nurse about the "metal' in my body today.  Either I didn't hear my surgeon correctly or the subject was glossed over during the surgical consult, way back when.

The nurse said that in a typical total abdominal hysterectomy with optimal debulking, plus my appendix removal, it would not be out of the norm to have "clips" and sutures that will forever take up residence in your abdominal cavity.  She explained that although each patient is different, the basic surgery is the same for most women.  She had not seen my dexa-scan, so she could not comment directly.

So to close the book on this issue, I am going to request an actual copy of the film and radiology report.  Then contact the surgeon's office in California and ask them to explain the remaining clips, etc.  It''s for my own piece of mind, plus I really want to know what is in my body.

Part of me ws hoping that this foreign material might be partly at cause for this ongoing upper abdominal pain.  Then I could inquire about it's removal, but the nurse said that these clips and sutures rarely cause pain or discomfort.

Looking forward to Zenyatta's final race before her retirement.  She runs Sat at 3:15 pm PDT. Wow, lot's of pressure for this beautiful horse.  I love to watch her run because for 1-2 minutes I am only thinking of her.  I totally and completely forget about "me" and my worries.  Thank you God for Zenyatta!

Be Love and God Bless 

last day of antibiotic

It was such a beautiful day in Seattle!  I was out of the house for the first time in almost a week.  I have been sick with either bronchitis or pheumonia (based on med prescribed).  Either way, I have been coughing up a storm, and flat out wiped out.  My WBCs are low end of normal, so I always get nervous when I get sick.   Thank God I am on the mend.

Unfortunately poor mom is sick too, but getting a little better each day.  I feel really bad for giving her this junk. Hopefully we will have had our share of cold/flu for the fall and winter with this recent confinement.

Missed Halloween with my nieces, such a drag!  They dressed up as the "Ghosts of Laura Ingalls".  I was totally creeped out when I saw their photo, Mandy (sister) did such a great job with their costumes and the girls did just as well with their poses during the photo.  Don't they look great?

I'm getting ready to meet next week with the Livestrong representative at SCCA.  I have filled out a survey, which took over 2 hours to complete.  It was very detailed and asked a lot about my emotions.  I hope they don't toss me in the local psyche ward............ha.

I am constantly worried about recurrence, and something needs to be done about that. 

I just hope to get some good exercise this week, as I feel really floppy and tired.  My antibiotics made it hard to fall asleep, been falling asleep at 4am each day for almost a week now.  That is definitely a problem that I need to make go away.  I've been sleeping past nooooooon each day.  Bad.

Had a bone scan today and the technician goes "have you had any abdominal surgery?"  I gave him my history and then said "why?".  He goes, "well there's something on your exray that looks like a big clip or a bunch of staples, like it was left there intentionally".

I'm fairly sure my gynocology-oncology surgeon in California said that all staples from my debulking/total hysterectomy would melt away.  Huh?  So now I have to ask my current gynoc to look at the image and tell me what the heck it is.  I should be aware of all foreign bodies remaining inside of me..............

You never know what will come from each day.

God Bless and Be Love

Keeping the train on the tracks

Funny how each day brings a truly different perspective.  First and foremost I must re-state that I truly love my doctors, the cancer center and am grateful to even have insurance.  I say this because I'm about to complain about healthcare costs.  I would never want anyone who cares for me to take this personally................

So I'm about to move into the poor farm, unless I can make a miracle happen, and I got the most ridiculous pharmacy charge of recent months.  I have been fighting this upper respiratory problem, and because of my weak immune system.  I was handling things fairly OK with over the counter meds, but today it was much worse.  It's been about a week of this, so as a precaution, I called my hematologist to see how my neutrophils were at last draw (which was a week ago).  By the way, I'm certain I picked up this bug visiting my rheumatologist who's office is in the hospital!

Anyway, they did a lab draw today, and prescribed an antibiotic as a precaution.  They did the right thing and I am grateful.  I don't need pneumonia. What I'm not really joyful over is the prescription charge.  Whatever!

My portion was just under $230........................for 7 pills.  My insurance did pay $50, so the actual price was $280.  That is $40 per pill!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  All I can say now is that they better work.  Geeze.

Now compared to a potential hospital stay, that's nothing, but still, yikes.  One prescription zapped roughly 40% (in my head math) of my income.

I am supposed to meet with the Lance Armstrong Survivorship program on Friday, but they may need me to move it out a week or so because the cancer center has real strict infection control. 

Now, part of the reason I'm meeting with them is to spend some time with the social worker to get my resources strengthened.  In other words, how can I make more money and what programs will help me with the cost of healthcare.

In other other words I just spent $230 to stave off potential hospitalization, but will delay a very important meeting that I need so that I don't have to completely lose my mind over a lousy couple hundred bucks.  The next time I see any doctor in the hospital, I'm wearing a mask.

I remember when I got my first paycheck as an OT, and I was astounded that I could earn over $700 per week, back in 1989.  After losing my lucrative income (long story about RA), I went down practically nothing, and it took me until 2009 to earn the exact same amount I earned in 1989.  It took me 20 years to get back to square one. Maybe I should have went on disability in 1995 when I was first really disabled.  I just didn't want to be "one of those people".  So I struggled to get back to a decent level.......

Then I got cancer.

I now own what would fit in my car as my brother drove it to Seattle for me.  I also own what would fit in a suitcase as my sister travelled with me here from California.  I can kind of relate to fire victims, but not in total, they had no choice on what to lose or keep.

See what they started.  I hate the feeling of being impoverished, which means I still have a lot to do in the spiritual department.  It's not that I want to have everything, I just don't want nothing.

I would be the happiest woman on earth if I had a clean studio apartment in a safe neighborhood, and the basics.  That's all.  I want to live near my mom and sister and feel like a regular person.

I make a bad interviewee right now too.  I look 60 years old and can't do basic math on paper  (funny ha ha).  Literally though, I'm slow to think and can't remember some things.  It's like I had a small stroke or something, I can't always put correct words to what I remember in my mind, or I've just blanked out the event completely.  Who wants to hire someone like that???  I know once I get back in the groove of some form of "work", I'll improve some because of the environment and challenge.

What matters most is that you love and be loved.  I just pray each day for tiny miracles to keep the train moving on the tracks.

I want to work in a church so I can be close to God all the time.

Be love and God Bless

New Clues to Ovarian Cancer, Pt. 3

New research is shedding light on how to prevent this silent cancer. Learn how early detection can save your life. Become aware of the symptoms so...

New Clues to Ovarian Cancer, Pt. 1

New research is shedding light on how to prevent this silent cancer. Learn how early detection can save your life. Become aware of the symptoms so...

Everything still seems hard

Hi.  Today I'm fighting a silly cold, so I have no energy. 

My good news is that my CA125 is 7.  Hip Hip Hoooray.  I still fight fatigue and abdominal problems, but feel more confident that I have some time to rebuild some assemblance of a life.

My worries right now have moved into the financial and insurance arena.  My income is a little over $600 per month.  It doesn't even cover my basic expenses, so I am walking on a tightrope.

I have not yet heard back from the Dept of Voc Rehab.  I have not applied for SSI, maybe I should.

I just need a good paying part time job to see if I can really handle working again. 

I just don't know if I can work.  My eating is so regimented now because of my abdominal problems and my fatigue is so unpredictable, I can't see an employer tolerating all my special needs.  I still have lots of medical appointments.  Next week I have three, a bone density test, eye appointment and meeting with Livestrong.

I feel like a total loser right now because of the work issue.  I just want to work from home.  I have enough in savings to go another month, then something drastic will need to happen.

I hope I don't look like a baby.  For example. I got this cold right after I went to the hospital to see my rheumatologist.  I have a weak immune system and probably caught the bug just being out in public.

That's my worry.  I really am homebound for the most part, even though I am NED.  I live on a roller coaster.  For example, after I heard my CA125 was 7, for a brief moment I felt on top of the world, ready to embrace each breath with a new level of excitation, living like I've never lived before.

Then I woke up with a sinus problem and have no energy to do anything.  How can I work if my body is still so fragile?  The answers will come.  I am willing to work, don't get me wrong, I just don't know what I can do anymore.

Another OC sister passed away this week.  That makes three in the last month, from my support group.  It is so sad.  Most of the sisters have experienced recurrences, and it scares me.  But I need my group, they understand me.  I love them all.

Be love and God Bless

Doctor, radiology and labs today for fun, CA 125 done

It was one of those clinic days for me today.  I had the opportunity to deal with both RA and ovarian cancer maintenance, spending most of the day at the hospital.

Actually it was great to revisit my rheumatologist, as she just returned from maternity leave.  She spent good quality time with me.  I received new xrays of hands and feet, bone density scan ordered, OT ordered to get a splint for my ulnar deviation.  I wonder how much radiation I will have received in the past 18 months, too much probably.

Had port flushed and labs drawn.  For some reason my oncologist ordered another CA 125.  I just had one a month ago, and it was 10.  I forgot if they were going to draw it once per month or every 3 months.  Chemo brain again.

I painted my finger and toe nails teal.  Everyone loves the color and it is a great conversation starter for ovarian cancer awareness.  It really is.  Plus, everyone has liked the "blue" coloring.  I'm happy that I have taken this step to be an advocate, at least in a subtle way.

I want to do more, but have no resources.  I'm teetering on a few ideas, but have not really settled yet.  I am still walking in a bit of limbo, uncertain of the course of my cancer, decision-making has been a chore.  But it's getting better.

Need to apply for SSI this week, money is running out.  Have not heard from voc rehab yet, hope they tell me soon if they can help me or not. 

This is the point where having a rich husband would come in handy, ha......oh well.

Be Love and God Bless