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

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,
Denise

My second Birthday

On this date at this time last year I was lying in a hospital room after major surgery to remove cancer.  I had a total abdominal hysterectomy, appendectomy, removal of my omentum and lymphnodes, as well as some smaller tumors along the peritoneal cavity.  I was "optimally debulked" according to those in the gyn-oc community.  According to my mother and aunt, my surgeon was beaming with joy at the results.  He said it couldn't have been any better.  The next phase, chemotherapy in 4-6 weeks.

I had to move to Seattle for chemo, which I completed the end of February.  My next CT scan is in about 3 weeks, along with another CA125 blood test.  Now that there is no evidence of the cancer, I am on lifelong survielance, because the recurrance rate is about 70% for my type of cancer, Stage IIIC.

Today I have the luxury of being with my family, to be exact I am sitting in my sister and husband's beautiful home.  I also got to enjoy a nice movie with mom earlier today.  As far as "second" birthdays go, its been pretty good.

A year ago I couldn't even roll side to side, I had staples from my breastbone to all the way down "there".   For several weeks I needed help in and out of bed, my aunt and sister had to stay with me because I couldn't take care of myself.  I was in so much pain, so much pain.  The narcotics made me constipated and it just gets worse from there.  Recovering from the surgery was a real challenge, but I did it.

Once chemo started, I had a whole new set of problems.  Unexpected visits to the emergency room, nausea beyond belief, severe abdominal pain still.................total loss of concentration and unbelievable fatigue.  It was hard just to watch TV or check my email sometimes.  Once chemo ended, the residual effects lingered on and on.

To this day I get nauseous every day, but just a little.  ( I have to take methotrexate for rheumatoid arthritis, and nausea can be a side effect).

Now I can walk around the lake, which is a big WOW for me.  It's not a power walk or anything, but it's a walk.  I need to get stronger.  Strange though, because I have no omentum, everything jiggles, and it "hurts" if I bounce too much, but I try.  That will never go away, so I have to deal with it.

I can concentrate now, and don't have that severe abdominal pain any more.  What I do have now though is an extreme fear of getting super nauseous and winding up in the ER.  I had severe vomiting episodes after chemo ended, and the cause was never determined.  I am very careful to take anti-emetics before I exercise.

I am still so lost though, and I need to resume some sort of work someday.  I cannot imagine a full time job but I can imagine a part time job. 

I apologize that this post has been more about my body than anything, but unfortunately that is where my focus has been.  I went to church last Saturday for the first time since May (when I got severely nauseous).  I met with the priest and it felt so good to confess my anger.  I need to rebuild my spiritual self and find my place in this world.  My place to provide good will, and I'm working on that.

My family and friends are the most important people in my life.  They got me through this episode and dark period in time.  They are supportive, but I know they don't want me lying around the house on disability doing "nothing" with my life.  Neither do I.

Having a chronic disability (arthritis) and cancer history make job hunting a real challenge.  To be honest, I love life and treat each day as a gift but I'd be lying if I said that the 70% recurrence rate didn't worry me.  It does, it clouds me. 

I want to get retrained with the "ticket to work" program, but for what.  So I live my life check up to check up.  It would be so MUCH easier if I already had a job to return to.  The cancer center is offering a "cancer and careers" workshop in August, which I will attend.  Truthfully, I wish I had my own little business.  Just a little something I did at my own pace that made me just enough to pay bills. 

As my physical self gets stronger and more able, my mental state improves because my confidence improves.  Still need to get to Gilda's Club. 

I am a thousand percent better today than I was this time last year.  I thank God for surrounding me with a very very very loving family that reached out to support me and help me when I was unable to help myself.  I thank Him for sending me good friends who really cared and took care of me during dark days.  My mother, aunt and uncle, sister and her husband, and brother really really really bent over over backwards to get me the resources I needed.  I would not have survived without them.  I also thank God for my surgeon and oncologist, who saved my life, literally.  I am blessed.

So tomorrow is a new day, another chance to make a difference, be a friend, and be Love.

Denise 

A prayer for those with cancer

Oh Saint Peregrine, you have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (names of those for whom you are praying, including yourself).  Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy.  Amen.

Sleeping

I still sleep 11 to 12 hours per day, no matter what time I go to bed.  No matter

what I do the day before.  I wonder if my medications cause me to be so

sleepy or if I'm still depressed.

This is a concern because eventually I need to really live a life that has some sense of normalcy.  Maybe "normal" isn't what I need to strive for.  In the world of my imagination I see myself running a non-profit organization that helps women blindsided by ovarian cancer.  In another world I do good deeds for the homeless. 

In another world, I make pottery and sell it on etsy, donating a portion to

ovarian cancer research.

I wonder if I will ever live alone again or have my own apartment.  I guess that is not really important. I really enjoy being with mom, even on our "bad" days. 

 I sometimes think she tires of me. 

Whatever I do in the future, I can't be sleeping 12 hours per day. 

I am still very anxious about being in large crowds because of my neutropenia.  Yesterday my sister's girls participated in a karate demonstration at a Seattle event called "Bite of Seattle".  I really wanted to go, but my WBC is low and I should be getting a shot for that this coming week.  Plus, I have this huge fear of getting severe nausea and vomiting still. 

I hope I'm not turning into a basket case.

I did speak with a kind woman from Cancer Lifeline (local support organization) last week.  She invited me into the center to take a tour.  I'm moving at a snail's pace on reaching out for support, but it feels right to me.  I must be driving my sister nuts, she is really pro-active and doesn't waste time. 

 I love her so much.

Anyway, I need to find a way to get up each day by 8am.  That is my short term goal for this week.  Let's see if by the end of the week I can awaken at a normal hour.  

Be Love,

Denise 

forgiveness

I have been relishing in the warm weather, joyfully awaiting each day knowing that I can actually walk outside and be comfortable.  Seattle's summer is short.  We have a small window of opportunity to do what we want in order to feel "satisfied" before the tiring rains begin again.  There is little time to worry or wonder about regrets or postpone plans.

That is sort of what I feel in terms of my well being.  I don't want to live my days with regrets, unanswered calls, forgotten business, unresolved matters of the heart and will, issues with the past etc.  Yet each day I am faced with an opportunity to do something to resolve some thing.

I opened my mouth today and accidently revealed something that was not supposed to be said to another.  The mistake was truly a mistake, I was not aware that this condition existed and now I feel bad.  The problem is that this one incident is part of a larger festering unresolved conflict that involves a group of people I love dearly, and we are all involved.  It's a matter of long standing problems that have caused immeasurable pain for others, and there seems to be no resolution.  It is simply a painful situation, and my heart breaks because I want to wave a magic wand to make it go away.  I want to turn back the clock and do things differently.  I want to fix it. I can't.  It hurts.

So I apologized for making my mistake and I apologize again. 

So how and why do we continue to live our days knowing that we have unresolved conflicts, pain and anger, nestled in each fiber of our being?  Why can't we just fix our lives?  Why can't we instantly forgive and forget, let people be who they are and have no expectations.  I don't know but if we lived our lives by only loving one another we would all be happier. 

I will continue to make right my wrongs as best I can until I die.  I have had a brush with death, just enough to appreciate forgiveness and love.  I have to work hard each day to be what I preach, so to speak.I am far from the best example. I will pray for all I love to live a life of love.

Be Love

My hair

A glimpse of sun

A beautiful day was today

Nothing to wash my smiles away

No thoughts about cancer or it's return

Just beams of sunrays around every turn

God hear my prayers that my loved ones are healthy

Fine spirit and body, humbled not wealthy

Let them feel love, radiance and glory

Let them have peace, content and no worry

Be Love

Denise

Birthdays

Yesterday was my 46th birthday.  It was a beautiful day.  Mom and I went over to Patrick and Mandy's house in the afternoon.  We played with Laria and Addie.  We created our "summer fun" calendar for the kids so that they won't get bored.  I had a chance to talk with Aunt Debbie.  I responded to many wonderful well wishes on facebook.  We had a really nice greek dinner and a taste of sorbet and carrot cake ice cream.  I got to watch a little bit of a movie with the girls.  Overall, it was truly a special day.

The only thing I wanted was to treasure time with people I love.  I missed seeing my brother.

I missed my friends from California.

I wasn't sure I would be here for this birthday.  This time last year I was in horrific pain and eveything I knew to be true was turned upside down.  Now everything is new, fresh, scary, uncertain, but hopeful and filled with opportunity.  I get waves of depression and get stuck, but know everything will be OK with God's help.  I'm in the right place.  I love you to all my family and friends. 

Thank you for a beautiful day.

Be Love

frozen

I feel stuck today

I'm standing at the top of a tall narrow pillar, blindfolded

Frozen

Fearful of any movement in any direction

Why, I do not know

Be Love