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