CDC Symptom Diary Card

Tuesday, August 31, 2010


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,

Friday, August 27, 2010

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

Wednesday, August 25, 2010

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

Tuesday, August 24, 2010

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.

Sunday, August 22, 2010

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.

Friday, August 13, 2010

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

Saturday, August 07, 2010

sleeping in

I slept until 1pm today.  Not sure why, I guess I needed the rest.  I went to bed at 11pm, and fell asleep quite readily after reading some of the Bible.  I have gotten behind on my reading, bogged down a bit with worries.  I'm not supposed to worry as my life is truly in God's hands.

I received a letter from Dr. G saying she is comfortable with returning to work in October, pending progress with arthritis.  That made me feel a little more at ease, as I'm really not ready, but getting there.

Every day I work on building up my strength and endurance, so that I can actually do meaningful work.  I still don't know though what it will be.  I didn't call the "Ticket to Work" organization yet, I need to do that next week.  I am procrastinating.  I feel totally stuck.  I think it's because I really just want to be involved in advocacy or have my own little business.   Lord help me figure this out.

Lord please also help my mom.  She has nausea all the time.  Our summers here in Seattle are short.  She is missing the moment.  I love her so.  I love my family. 

Tomorrow I get to enjoy the Blue Angels show with Mandy, Patrick, Laria and Addie.  Hopefully mom will be able to go.  It will be so so nice to laugh and smile, in spite of the rain.

Be Love,