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

God Bless Fightgirlandi The Dash

This poem was posted or written by a woman in my online ovarian cancer support  group.  Her online name is "Fightgirlandi".  She was diagnosed with OC in August 2009 and passed away a few days ago.  I am posting her poem to help all of us who are graced with the ability to breathe fresh air today.  We are gifted with life for now and maybe we can find a way to make our lives better for those around us. 

God Bless you Andi.

The Dash

• By fightgirlandi

• Posted January 27, 2010 at 9:41 am •

• Shared with the public

I read of a man who stood to speak,

At the funeral of a friend.

He referred to the dates on her tombstone

From beginning to the end.

He noted that first came the date of her birth

And spoke the following with tears.

But he said what mattered most of all,

Was the dash in between tho---se years.

For the dash represents, all the time

That she spent alive on earth.

And how only those who loved her

Know what that little line is worth.

For it matters not, how much we own;

The cars, the house, the cash,

What matters most is how we live and love

And how we spend our dash.

So think about this long and hard.

Are there things you'd like to change?

For you never know how much time is left,

That can still be rearranged.

If we could just slow down enough,

To consider what is true and real.

And always try to understand,

The way other people feel.

And be less quick to anger,

And show appreciation more,

And love the people in our lives

Like we've never loved before.

If we treat each other with respect,

And more often wear a smile

Remembering that this special dash

Might only last a little while.

So, when your eulogy is being read,

With your life's actions to rehash

Would you be proud of the things they say

And how your spent your dash?

Faces of Ovarian Cancer

I used to be the focus queen

Yesterday I was so proud, I was able to drive to the eye doctor without getting lost!  For me this is major.  I still get nervous driving in new areas and Seattle's downtown is a maze.

The eye doctor said my eyes are healing well and now all I need to do is continue Restasis and an over the counter cream.  My prednisone and methotrexate have helped tremendously, so now the next step is new glasses.

I still get nystagmus periodically and my eyes will blur with prolonged computer use. No biggie though, just super happy to see.

Today was a day to be grateful for sure.  Crisp autumn air, blue skies, sunshine..............wow what a beautiful day.  Had a moment on the phone with my sister, which is always a treat.  Spent some time online doing more Ovarian cancer research.

I found out from a medical presentation sent to me by one of my OC sisters that the best predictor for survival rate in the cases of advanced OC (stage III/IV) is the success of the initial surgery.

I still only have 20% 5 year survival rate, but it's "better" because my surgeon was able to optimally debulk me. 

I feel stuck, like I'm in between two worlds.  I need to take advantage of this "remission" to the best of my ability, but prepare for recurrence.  It's hard, I feel like nobody understands.

Next week I meet with Survivorship counselor from Lance Armstrong foundation, to help me with these issues.  By then I hope to have some word on Voc Rehab too.

I want to go away sometimes, just take a vacation.  But I can't tolerate the travelling yet, not to mention no money.  But I do hope to travel while I can.  I say that not to be trivial, just that I need to make a bucket list.  Everyone needs a bucket list..........................everyone needs to make sure they get to do some things that make them feel pure pleasure and joy.

God did not grace me with a husband or children, so I do feel empty.  I doubt I'll ever marry now, given my health situation.  So I am seeking something to nurture, besides myself.  That's why having an empty job seems to me that it would speed up my death rate.  I'm not independently wealthy, so I can't just "volunteer" like I'd like.  Not sure about social security income being enough AND my insurance rates skyrocketed.

I know this sounds boring to some, but to me, every thing I do takes extra effort.  Sometimes it takes me half the day just to pay a few bills, I get distracted, or unfocused.  I was never like that.  I was the "focus" queen.  I could be counted on to get things done.  Now, I don't know.

I do believe though that when I will be presented with the challenges in the future, I will have more determination. 

I'm still really forgetful, which bothers me.  I hope that goes away.

Be Love and God Bless

work ever?

Today I met with an intake specialist at Voc Rehab.  My hope is that I will qualify for training and assistance with finding a job/new career.  I have a lot of barriers, but also a lot of will.  My biggest goal is to spend my life doing meaningful purposeful activity that helps others and provides me a modest sustainable income.  I want to work from home because I have so many medical issues with my abdomen, nausea, fatigue and arthritis.  I also want a home based career in case I do have a recurrence.

I am doing everything I can to be proactive and a good planner.  If I have a home based career, I can manage my tasks and projects around my medical appointments and health problems.  God forbid, but if cancer returns, I would have freedom to do some things from home while on chemo, if able INSTEAD of possibly losing my job completely due to extensive time off. 

Only employers with 50 or more employees are required to honor Family Medical Leave Act.  I just don't want to work in an office with lots of people playing office politics. I have no desire to "climb the corporate ladder".  I don't even know if I'll be alive in two years.  Nobody knows how long they will live, so why waste your precious life working for someone who dislikes you or hurts you somehow.

Plus, I have a weak immune system, so I don't want to be around a lot of people, I just don't. 

I can't take those kinds of risks.  Negative environments and high stress can aggravate cancer, I don't want any remnants of cancer to be aggravated in my body.  I believe I have every right to find the optimum work situation.  At least I'm going to try my best, that's all I can do.

I don't want to be a government burden, and I don't want to live in "the projects".  Mom and I cannot live together forever, and she needs her life back.  It has been 5 years since I have been able to live in an apartment because of poor finances.

One of my wishes before the Lord takes me is that I can at least have a studio apartment in a safe neighborhood, and feel some sense of dignity.  Am I being selfish?  I need space to re-grow, re-birth, re-ignite my senses.  I want to be a positive influence for my family, not a drag.

I don't know, all I can say is that I am doing the best I can do.

Be Love

Understanding Ovarian Cancer