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

back to chemo side effects

I was really hoping to blog about my dreams, but I'm dealing with another episode of vomiting.  Last night (Monday) I got very sick AGAIN!  I had accidently eaten a chips ahoy cookie with peanut butter, and a few hours later, goodbye dinner.  I know...gross.  But this is really getting me down.  This is the dialogue of my life..............................................................I'd rather be talking about dancing or the latest movie I saw, or a trip to the beach or whatever.

The SCCA oncology nurse called me this morning (they are so good) and I told her about last Thursday and last night.  Good news is that she said I eat a very healthy diet, good fiber and nutrition.  Bad news is that if this is intermittent bowel blockages, I will need to eat less fiber and more processed foods........I'm confewzed!  Processed foods can increase cancer risk...........I don't want to change my diet.  I will follow her orders for now, just to see if it makes a difference.

So my instructions are to tone down the fiber, drink lots of fluids, and wait for my upcoming CT scan.  She wasn't keen on my problem being a peanut allergy, and I think it is.  But who the hecka knows.

All I do know is that for the rest of my life I may be dealing with abrupt episodes of vomiting, and how will I live any normal kind of life in that condition????

It makes me afraid to leave the house or plan a trip or go on a plane or long drive or crowded event or anything.  I really need to reach out and find out if this is a common problem.

The SCCA nurse said that this blockage problem is a side effect of chemo, and that I will need to meet again with a nutritionist and be instructed on how to cope with this problem long term.  I read that as "there's no cure" and I'm bummed. 

I know I will get better at coping with this.  I have a sweet niece who has migrains (she's 10) and she always has vomiting episodes when she has a migrain.  If she can handle it, I can handle it. 

So my plan today is to see how I feel, and hopefully I will be able to take a walk later in the day.  We will only have two warm Seattle days this week, the rest of the time the temperature will be in the 60's.  Yuck.

So, it's beautiful and I am going to do everything I can to enjoy fresh air, blue sky, the chance to just be here and exist in peace.  I am glad that I don't Have to be anywhere today other than to go get a prescription. 

These episodes wear me out a bit.  I plan to rest most of the day, say some prayers, and count my blessings.

Be Love.

movie with Ewan McGregor

So to make things even stranger, I came home from housesitting and found my netflix movie on the table.  It was the latest one with Ewan McGregor, "Men who stare at goats".  How weird is that?  I had totally forgotten that movie was on the waiting list, and really had no idea what it was about.

Just wanted to mention it.  It's a funny movie, by the way.  They talked about cancer in the movie though...........

Be Love

vivid dreams about Ewan McGregor

Don't ask me why, but I had a very very odd and intense dream last night about Ewan McGregor.  He told me that he has cancer, stage IV.  It was the weirdest thing and I pray to God that it is not true.  I was part of a group of people who were playing a game.  The game was like a play, a musical, but also like a sport.  Sort of like being a dramatist, mime slash musician slash dancer competing to win "something" in a time similar to "waterworld".  We were competing as a pair, and he started crying, held me and said he had cancer.  He started shaking his head side to side in denial and it was awful.  I wanted to comfort him and take his pain away.  This went on and on in my head in loops of variations of the same message, over and over.  Why Ewan McGregor and why cancer?

I got violently ill again Thursday evening, and today I still feel nausea and fatigue, but am grateful the episode is over.  I have been housesitting, taking care of kitty, garden, mail etc.  It's all I can do right now to get ready to go back home. 

Maybe the dream is a result of the extra Lorazapam I had to take for my nausea.

The thing is I have always adored Ewan McGregor.  He's a doll, and such a wonderful actor. 

I have been having vivid dreams all week.  Maybe I'll start putting them in my blog and see what happens.  My family is pushing me to get my life together and "get a job" etc.  Well, I am trying here.

Who is going to hire someone who may or may not be able to show up from day to day.  I pray to God for a work from home purpose.  I pray that it comes, and I will seek that form of income.  I can't afford to live in Seattle on disability.  It won't work..........things will be OK.

In the mean time, my dreams may be a way to sort out my frustrations and worries, so let's see what happens tonight.

Be Love.

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Trisha Torrey is a patient empowerment advocate. In this article, she quotes me! I am so thrilled to know that there are other women out there who really see the crime in allowing undiagnosed ovarian cancer to persist. Thank you Trisha for your powerful presence. Thank you for listening to me. Denise Archuleta