Vocational Rehabilitation Update

Fabulous day with UW Voc Rehab department.  I now feel a sense of hope and confidence that there may be work I CAN do.  I met with a wonderful woman who was kind and sincere.  She took some time to warm up the conversation with nice holiday talk and then proceeded to discuss WITH me my needs and wants.

After at least an hour of talking about my vocational history, medical history, and potential hurdles we created a workable plan of action.  First thing being first, I have nothing to wear to an interview.  She will reconnect me with the state DVR to assist with wardrobe and possible free computer training.  I am going to spend some time on my own laptop to get re-familiar with the basics.  I'll probably need to be re-tested on my computer skills...ugh.  I've never really been a computer "expert", but I do learn new tasks fairly easily (maybe I need a little more time now than in the past).

The ideal scene is for me to first land a part time job that has afternoon hours, that's not sales and in a low-stress setting.  I expressed that because of my fears of recurrence and difficulty working under high stress levels, it was really important that I work with/for people who actually like me.  It sounds so "grade school" but at the end of the day we spend 30% to 50% of our time on job related activities.  That being said, why would I want to spend my last few years in an environment that's really stressful or around negative people who don't like me.  I just don't want any part of it.

I am not going to compete with anyone for a CEO job, not now.  In the past, I had dreams of owning my own company and having a stable retirement.  I could still start a non-profit group that helps women with ovarian cancer, and I'm sure I will, but I can't do that without first being stable myself.  I am not planning on using my job to fulfill my social needs, I just don't want to work around a bunch of sharks.  I want to have the chance to enjoy work for once in my life  ;-)

When it's determined that I can handle part-time work, the goal is to progress to full-time work.  That could be either growing the current part-time to a full time, or getting a new full-time altogether.

All this will depend on how or when a cancer recurrence appears.

I let her know that ideally I want a job where I work from home. If I work from home and have flexibility with my projects, then if I have a recurrence, I can restructure my workload around chemo, etc.

If I don't get the ability to work from home, then I run the likelihood of losing my job every time I get a recurrence.  That I cannot bear, I just don't want to do that.  Can you imagine?  Our economy is really not in the best of health, as everyone knows, so the last thing I need is to have to find a new job every time I finish a chemo program.

Here's where I find myself wondering why I never got married. I always wanted to be married, but no guy ever wanted me that much, so I'm alone.  I have my mom, dad, sister, brother and aunt.  I have a few good friends.  But I am alone, for the sake of my personal life.  It would be so wonderful if I had a hubby who took care of me, but I don't.  So I will forge ahead and do the best I can.

That's a whole new area of depression, that I don't want to talk about right now.

Anyway, I'm on the right track.

Be Love

Avastin may help Ovarian Cancer Patients

http://www.cancernetwork.com/ovarian-cancer/content/article/10165/1739232?GUID=F465BF3C-0BD5-404E-A2A8-C0BF422F4322&rememberme=1

Oncology NEWS International. Vol. 19 No. 11

 

Bevacizumab offers new hope to ovarian cancer patients

By FRAN LOWRY | December 4, 2010

---

Results of ICON7 trial will influence discussion of treatment options between oncologists and patients.

Early results from the ICON7 trial suggest that adding bevacizumab (Avastin) to standard chemotherapy in women with newly diagnosed ovarian cancer reduces the risk of disease progression during the first year of treatment.

The findings from the large, multicenter, phase III trial were announced at ESMO 2010 by ICON7 lead investigator Timothy J. Perren, MD, a consultant medical oncologist at Leeds Teaching Hospitals NHS Trust, UK.

Ovarian cancer initially responds very well to surgical treatment and chemotherapy, but the benefit is short lived, Dr. Perren said. "More than half of the patients go on to develop recurrent disease from which they will eventually die, despite our best current treatment," he explained. "For the women we have included in the ICON7 trial, the average time to development of recurrent disease is about 18 months and the average survival time is about three and a half years."

Bevacizumab has been shown to improve outcomes in breast and colon cancer. To see whether it worked in ovarian cancer, the ICON7 investigators randomized 1,528 women (median age, 57 years) with high-risk early- or advanced-stage epithelial ovarian cancer, primary peritoneal cancer, or fallopian tube cancer to one of two treatment regimens after their surgery.

Women in the control arm were randomized to six cycles of standard chemotherapy (carboplatin AUC 6 and paclitaxel 175 mg/m2) alone given once every three weeks. Women in the research arm of the trial were randomized to the same chemotherapy regimen given concurrently with bevacizumab (7.5 mg/kg) for six cycles, followed by maintenance bevacizumab for 12 additional cycles (abstract LBA4).

At 12 months, the risk of developing further progression of ovarian cancer was reduced by 15% when compared with the risk of progression seen with chemotherapy treatment alone. The effect of bevacizumab was strongest at 12 months, but then fell over time. Overall, the median progression-free survival in the control arm was 17.3 months vs 19 months in the research arm (P = .0041), Dr. Perren reported. Bevacizumab appeared to have a stronger effect in patients with a particularly poor prognosis, he added.

Dr. Perren also noted that the drug was well tolerated by the patients, with high blood pressure as the most common adverse event related to bevacizumab. Eighteen percent of the patients required antihypertensive medication. In comparison, 2% of women in the standard chemotherapy arm developed high blood pressure necessitating treatment.

The results from ICON7 support the findings of the Gynecologic Oncology Group (GOG 218) trial that were announced in June at the 2010 American Society of Clinical Oncologymeeting, Dr. Perren said (ASCO abstract LBA1).

"This is the first new drug in first-line treatment since the mid-1990s to show an improvement in outcome for ovarian cancer so it is a very big step forward," he said. "The results of ICON7 and GOG 218 will undoubtedly influence the discussions patients have with their oncologists, but probably more than that, it is going to influence the next generation of clinical trials. It is not possible to ignore these data."

Psychologist moved me to January...Christmas thoughts

Feeling sleepy literally right now, so I hope I don't bore anyone.  Good day to you.

My psychologist cancelled today because she is ill, and they won't let her work in that condition.  The cancer center has high infection control procedures, so I'm just hoping she gets better soon.  This though has thrown me a bit of a curve ball.

My next appointment is Jan 5th 2011.  I'll be paying full price for the consult, and I really didn't want to do that.  My deductible is $2500, so I'll be spending money no matter what until I reach that number, it's just a downer.

I'm not sure yet if I need regular visits, or if a free local support group will suffice.  So I may just skip the psychologist altogether and see how things go with voc rehab.

Part of my depression is that I have no job waiting for me.  The down economy scares me so I am relying heavily on help from voc rehab.  I don't even have a dress or suit to wear to an interview.

I stick to my beliefs that there are no accidents and need to keep my faith clear and strong.  I just need a little help, a little nudge, a little more energy, and the right place to work.

I did my 20 minutes of quick exercise activity, felt good.  I just ran in place and did some aerobic movements to get the blood pumping.  My arthritis is acting up, the soles of my feet hurt..............but can't let that stop me.

I'm so excited for Christmas, still need a special gift for mom.

I'M TRYING TO  LIVE AS IF THIS IS MY LAST CHRISTMAS.  So I'm wanting to get out the cards, and presents to special people.  I guarantee you members of my family are frustrated because they don't want me to spend any money, they just want me to save my change.  I am so grateful to have such a protective family and they are right, I should save all my money.

But this Christmas was not too expensive, really.  I have total faith that God is taking care of me.  It's going to be OK.  I will not be a drain on my family and will be able to take care of myself.............

But at the same time, what if this is my last Christmas?  I could have a relapse before next Christmas and it's possible treatment won't work.  So today is the day to give, not waiting until I'm earning more money.

That's the problem living in NED land.  Nobody can give me any solid answers so I can't make any solid plans or decisions.

Christmas is the most special holiday for me.  I love Christmas.  Easter is hard for me, I just really get emotional, and it's just not the same.  It's a greater joy, on Easter, but the week before Easter and Lent is a lot of work and inner soul searching.

So Christmas is just joyous and a time for freely giving.  I just want to give what I can.

Love you.

Merry Christmas

Good News

Hi,

I am so relieved that my CA125 is still at 10.  My pelvic exam went well too.  I'm feeling more secure with this news and am ready to see my psychologist tomorrow.  It's weird, I still feel depressed, and tired, but less heavy than before.  This is the life of being NED (no evidence of disease).  You live in blocks of time, until the next test.

So for now I will relish the joy of this good news.  Have a beautiful day.

God Bless and Merry Christmas

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

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

Update from Oncologist

I met with Dr. Gray today, what a joy.  She shared good news, and I am relieved.  I am still NED and my CA125 is now 10. She said the CT scan showed no new tumors and looked good, so I am relieved.  Recurrence is my biggest fear.

I talked with her about my lingering issues with abdominal pain, fatigue, nystagmus, vomiting etc.  She reinforced that the body can take up to a year to heal from the chemotherapy and surgery.  But overall, I am improving.  I see the Oncologist again in three months.

I need to watch my food intake probably forever, being careful with fiber.  Haven't decided on an allergy test yet, but will just avoid peanuts for now at all costs.

This good news frees my mind and helps me to be more hopeful for the future.  I meet with Dept of Vocational Rehabilitation in a few weeks and need to see if I qualify for any of their services.  I can earn some money in addition to the small disability income I currently receive.  If it is at all possible, my dream would be to have a part time job that is homebased, in advocacy or some form of computer work that has a mild training program.

So off I go to the next step while I continue to rebuild my strength, endurance and digestive health.  Thank you God for blessing me with my mom, sister,brother-in-law, brother, aunts, and uncles who have been so supportive.  Thank you God for giving me friends who have offered laughs, kind words and support from day one.  Thank you God for blessing me with an amazing health team here in Seattle.  God Bless everyone who has touched my life.

Be Love

Update on Breast Health

Today I went in for my mammogram and breast ultrasound.  The nurse practitioner had recommended the ultrasound due to her locating some enlarged dense tissue on my right breast.  Well hallalua and thanks Be to God, no lumps or abnormal tissue was detected today.

Because I am BRCA 1 mutation positive, I need to see the NP in three months for a follow up breast exam, just so she can determine if the area changes ins shape or size.

WHEW!

If I must have a mastectomy, I will have one.  But for now, since the monitoring is going well, it is so so nice not to have to be so worried about breast cancer.  I have enough to worry about with ovarian cancer recurrance rate issues.

So thank you all for your prayers.  Thank you God for watching over me and giving me something to smile about. 

Be Love and God Bless!

Qigong and update

I am really pleased with the Qigong dvd I rented from netflix.  Giam sells this dvd, and I decided that I need to buy it, as an investment in my health.  My internal organs are so screwed up, so touchy, and unpredictable, that I am frozen sometimes unable to leave the house.

Qigong is a series of ancient Chinese postures and movement patterns that help to energize and release your bodies negative energies ( so far as I know).  I have done the exercises a couple of times, and feel more balanced for a bit of time.  It was suggested by one of my OVC sisters to try Qigong, and this seems to be a good fit for me. I am grateful for my OVC sisters.

Had my pelvic CT scan, bloodwork, and breast exam last Thursday.  LONG day.  Reminder, I'm also BRCA1 mutation positive, so I also have 6 month checkups.  Next week I have breast ultrasound and mammogram and also a meeting with my gyno-oncologist.  I've never had anyone give me a breast work-up like that before.  Pulling, poking, stretching, pinching, pushing, rolling...my gosh.  The good news is she found no "lumps" but did find some abnormal dense tissue on the right wall of my right breast, hence the ultrasound.

I am praying for clear pelvic CT and good CA 125/bloodwork.  I will also be praying for a normal mammogram and ultrasound.

I just set up a future appointment with the state Voc Rehab center.  I need to earn more than $600 per month to get my own place.  So I need to find a part time job that pays fairly well and try to focus on what my future can be. 

For now my mom is so gracious and allows me to stay with her, but she needs her space.  She needs a life, so as long as I am not on chemo, I should be striving for a more independent and meaningful life.

I still sleep 12 hours per day though.  I wish I knew why.  Am I still depressed or is that side effects of all my meds????  Not sure, but I must return to a more reasonable sleep-wake pattern.  Maybe I need help.  I don't know, I just have to try harder to get up earlier.

Wish me luck on all my test results.  Love you all.  Be Love and God Bless YOU 

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

battling with peanuts

On Sunday evening I was happy to have an opportunity to house sit and watch Paul, my sister and her family's kitty.  He's a gem, real bright and fun, it's something I enjoy.

After 7pm mass, I went over to their house and was greeted with tremendous enthusiasm because I had let him out earlier to play.  He was ready for warmth and food.  I settled in and fed him dinner anticipating a fairly relaxing night in.

I was hungry for a tiny snack, so I grabbed a small handful (10 pieces) of Puffin cereal to have with my tea.  I was tired by 11pm, and was probably asleep by 11:30.  At midnight I was awakened with terrible tummy pain and found myself hurling into the trash can.  That, along with other unpleasantries lasted until almost 4am. 

I was dumbfounded because I couldn't figure it out.  Well, in the morning I took another look at the cereal box and it had the words "peanut butter" blasted across the front of the box, and I missed it.  I haven't really been paying attention like I should and now realize I must be an avid label reader.

Today is Wednesday, and I am finally having some oatmeal.  I've had terrible headaches, down to 104 lbs, waist now 28.5.  Mom's at the store and offered to get some chicken noodle soup.

The nurse at the SCCA said it can take a full week for your digestive tract to get back to normal after server episodes of vomiting and diahrea, because they stay slightly inflamed for a while.  So I am slowly integrating food and rehydrating. 

This totally blew my little holiday weekend.  I had wanted to stick around to see how Mandy's trip was at Ocean Shores.  Haven't had a chance to talk to her.  Today was the first day back to school for my nieces, so hopefully I'll get to learn how their day went later.

Anyway, Paul was so sweet, and napped with me the whole time, which helped me feel better.

To better days.

Be Love

lunch with mom

Yesterday I had a wonderful time with mom.  I wore my teal T-shirt, and we walked a few blocks to a little restaurant for a late lunch.  It was sunny and fresh outside, a rare treat for Seattle.

It was so nice to sit outside and laugh, enjoy goat cheese pizza and an iced tea.  Events like this are enormous jumps in recovery for me because my abdomen will never be normal again.  The food was good and I had no pain, such a relief.  Such a joy.  I thank God for giving me the opportunity to enjoy the simple pleasure of lunch with mom.

Waist still 29"

God Bless and Be Love

Tomorrow wear Teal

Today I wanted to remind you all that tomorrow is national wear Teal Day in support of Ovarian Cancer Awareness Month.  Do you have anything teal?

I went to the dermatologist today for a skin check up.  Thanks be to God all my freckles and moles are of no concern at this time.  Yay!  I am so relieved that I went because once you have cancer, you tend to be hyper-aware of potential sources of cancer in other areas of your body.  I was instructed on how to monitor my own skin, and contact them if I noticed a problem.  What a relief.

Last night I had nightmares that I was bleeding internally.  Probably all weird because I had watched the movie "The Lovely Bones" with my mom that evening.  It was surreal, creepy, but had a strange sweetness to it.  I makes you face death and confront your views on the here-after.  I'd recommend it.

Since it has been such a beautiful day here in Seattle, I have been so happy today.  I love it when the sun shines.  You can see the harbor much more clearly and people seem more content.

When I was on chemo, I remember feeling literally "afraid" of everyone.  Almost paranoid.  I would take extra measures to lock my car doors when driving, and saw everything as a threat.  I don't feel that gloomy fear anymore, thank God.  I just wish we could be graced with the sun a little longer.

My waist is 29 today.

Be Love.

First day of OVC Awareness Month

Have spent most of the day online responding to women asking for help on the "inspire" blog sponsored by the National Ovarian Cancer Alliance.

I am going to daily/regular measurements my waist just under my rib.  Today I am at 30" (35-30-35) to be exact.  I want to monitor for fluid retention, because I STILL have ongoing abdominal pain.  Because I don't know if the pain is scar tissue, digestive, missing omentum, or tumor, I want to do all I can to track my progress.  Tomorrow I see a dermatologist for skin screening.

Michael Douglas was diagnosed with "throat" cancer, stage IV, just a few weeks ago.  He also suffered through physician incompetence, missing the cancer in it's early stages while most likely to heal.  I feel bad for him and his family, and my prayers go out to them.  This is his first week of chemo and radiation, and seeming well on David Letterman, the general public has no idea how much he will suffer.  Chemo and radiation get more and more toxic with each dose.  I pray God stays with him and gives him the strength to tolerate the treatment regimine, to rid him of his cancer.  God Bless Micheal Douglas and his family.

Be Love

SEPTEMBER IS NATIONAL OVARIAN CANCER AWARENESS MONTH

http://www.ovariancancer.org/

With September being National Ovarian Cancer Awareness Month, I am hoping that you will be taking some time to become familiar with the symptoms and also checking with your gynecologist to make sure you are healthy.  Please ask your primary care physician and gynecologist to explain to you the symptamatology of OVC.  I ask this of you because you need a good doctor.  You need a doctor who knows the symptoms and who will take all your symptoms seriously, God forbid any occur.

No doctor's ego or intimidation is worth the sacrifice of your health!

I read daily posts from ovarian cancer survivors and those in treatment and all are suffering.  It is unbelievable to me how much long term suffering exists in the OVC survivor. We are strong women who didn't need to suffer.

We need more sophisticated screening for EVERY woman so that she remains free of this deadly disease.

Be the one to save yourself and be the one to save your female friends and family.  Spread the word and learn about OVC. 

Be Love,
Denise

neulasta for life

Had a great visit with my hematologist yesterday at the cancer center.  He asked me an odd question "doesn't coming here give you anxiety?".  He was telling me that most patients don't like to return to the cancer center after they have finished their chemo.  I told him that the cancer center feels like home to me, they saved my life.  I can understand why patients would not want to be reminded of their pain.

I want them to know that they helped me, I want them to see me smiling with gratitude.  I want them to know that they matter.

I will have to take neulasta shots for the rest of my life.  Drag.  After two months of weekly lab tests, there is no cyclic neutropenia, no lymphoma (Thank God), and no solution other than neulasta.  Neulasta costs $7K per injection.  Fun.

Anyway, I can't avoid it, because my WBC/neutrophils get so low that my life is threatened because of possible infections.  My doctor said he may try to help me with the cost by doing what he can to negotiate with the powers that be and see if I can get a cost break.  

I am very grateful to him for his efforts.  I had been dealing with low counts for years, with multiple hematologists literally stupified by my situation, and now I have an answer.

My JRA has beaten my immune system to a pulp and my bone marrow no longer wants to produce neutrophils.  Maybe I would be a transplant candidate.......forgot to ask about that. 

Anyway, so I have a lot of bone pain today (side effect of neulasta), but I'm protected for a few weeks.  Yay!  

On a side note, I'm making friends with the local neighborhood cats.  All the neighbors have indoor/outdoor cats.  They are coming around and I get to play with them.  I love that!  Just love it.

Be Love

Cre'me Brulee

Well, per doctors orders, I am eating less fiber.  So instead of a nice soup or salmon with veggies, I had Cre'me Brulee for lunch with peppermint tea.  My mom and I went to a local little lunchhouse called "The Barking Dog".  It's actually within walking distance.  Met a nice older guy named John who chatted with us a bit.  Mom had halibut and salad, with some white wine (gosh I wish I could have alcohol at least once). 

Lunch was grand, and after the lorazepam, queasy pop and extra omeprazole, I think I was OK to eat.  Life is fun.

It was nice to chat with mom about this and that, watching people walk their dogs, talk about things other than our illnesses and worries.  It was a good day.  Thank you God.

Be Love