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