PET Scan to be scheduled

On my way home from the oncology visit I decided to stop at the store, and met a homeless man eating samples from the deli soup cart.  He stopped me in my tracks with questions about movie characters, he was stuck on "Ghostbusters" and couldn't remember one of the actors.  Well, he was talking to the wrong person, because I can't remember stuff like that, so we had a heck of a time.

What caught me was that he was so engaging, polite, and outwardly interested.  He told me he was a veteran and had PTSD, and that the government gives him $500 a month.  He carries with him a bucket, his backpack and a squeegee.  He washes windows on cars to make extra money.  My mind flashed back to a time during college when a few of us drove to Mexico, and in the shanty towns children would surround the car, each with a squeegee, asking to wash your window for a quarter.

This man was tall, african american, handsome in a sense, but skinny as a rail.  He had on lots of layers but when I saw his waist I gasped.  It is heartbreaking.  He talked and talked and talked and talked and talked and talked.  He was well read, and put me to shame.

I gave him $10.  On my way out of the store, he stole a flower from the floral department and handed it to me.  He also kept asking for my phone number, but of course that wasn't going to give it to him, ha ha.  But he did give me a slight kiss on the back of my hand.  I can't believe I let that happen, but I wasn't afraid.

I drove away and he disappeared, probably went back into the store for more soup. I had not mentioned the obvious yesterday, but please keep this fellow in your prayers too.  What he must endure, I can't imagine.

Today my oncologist called to say my CT scan showed a few things and she wants to do a PET Scan.  I guess there is a small lesion in my lower pelvis and the one on my liver seems to be a concern.  She is being cautious and wants to check for activity levels in these areas.  They are small though, about half an inch or so.  My CA125 is 15, so that is good.  She said that if it were 100, then she would think I was in a recurrence.

So for now I await the nurse's call to schedule the PET Scan.  sigh

I scheduled a flight to Colorado the end of April, and I want to not be on chemo.....ugh....can't think about that I guess..........can't worry about that......if it looks like I need treatment then I'll take a short flight out early before I start treatment.  It took me over a year after I finished chemo the first time to be able to travel...........sigh.  This is the life of cancer, it comes and goes, it never completely goes away.

I feel nothing right now.  I have no control over this and ...................I don't know.  Anyway, I just pray that it's nothing to be worried about.  I was blessed to meet such an interesting person yesterday and I have a loving family, and am so grateful to God that my doctor is amazing.

Peace and Love,
Denise

CT scan and CA 125 on Tuesday

I have a follow-up with my gyoc-onc tomorrow.  Ct scan, Ca-125 test, and probably exam.  Usually I don't tell people much any more because the visits have been going great.  I'm going to attribute my severe fatigue to arthritis flare for now.  I'm confident all will be well.  Just putting it out there.  I'll post the results.

Yesterday for the first time I really visualized the size of the tumors that were removed during the initial surgery. 10 cm each, plus many more.  That's the perfect size of a grapefruit. Wow....

The first week in February I'm excited because I'll get to talk with some medical students and share with them what it was like to not be diagnosed, how cancer got missed and the goal is to help them be more aware of the subtleties of OC.  I'll let you know how that goes.  Had a great evening!!!!!  Got to see my nieces.....yay and spent dinner with my sister, her husband and the kids.  I'm smiling.

Left in the dust

This is a quick congratulatory note to my sweet sweet niece who passed one of her black belt tip tests over the weekend!  Her very gifted older sister got her black belt during the Holidays and now her little sister is on the way to earning her own.  I did not get to go to the graduation ceremony because I work evenings, but I was there in spirit.

I feel left in the dust because of how well conditioned they are.......

I have another niece and a nephew in another state who are remarkable hockey and soccer players.  I can't wait to get back home to see them play...just can't wait. I am so so lucky.  All of these children are amazing, cheerful, loving and mindful.  They're just darn good kids.

Although I was never blessed with the joy of being a mom, I feel as if I am partly their mom, if you know what I mean.

I just wanted to pass along some family cheer.  I wish I could be with all of them all the time..........sigh.

Be Love
Denise

"You were never here", she said to me

I was breathless and panicked as I was wandering around campus.  The buildings were all slanted, in differing directions, grayed, blue, black and silver.  Part of the campus looked like my old college and part of the campus was not anything I've seen before.  I ran into a building, and traversed the sloping shiny vinyl flooring, brown with tiny polka dots, and stopped at a large picture window.  I turned in circles and started to sweat. I was ready to cry.

A woman came out of the office and asked me if I was OK, and I said that I was lost.  I told her that I forgot my schedule.  I couldn't remember where I was supposed to be.  I was missing class and didn't want to be punished.  I was late. She took my name and came back with bad news.  She said "We have no record of your enrollment".  Ever.

I had been going there for four years, at least.  I ran outside and into another building and another and another. I  felt invisible.  I stood outside on a side walk and tried to study the spider like legs of each path, not knowing where to go. It was gray outside but patches of green come from the ground, giving me hope.

All at once ever person looked up into the sky, gasping, then suddenly shrieking, they started to run.  I turned around and looked up into the sky and the clouds were churning and turning green. The clouds seemed to be dropping like lead and in the clouds appeared shapes of the faces of enormous apes.  The shapes were squared and detailed, protruding forward.  Two, massive heads side by side. Facing them were two more apes, smaller, but equally detailed, as if the teams were going to fight.  I was imagining this horrific giant battle in the sky between these beasts when suddenly large bolts of lightening cracked across the sky.

The apes started moving closer towards each other and a large tornado came swirling down from the sky. I was jolted from my frozen state and ran as fast as I could to the closest building on campus.  The floor kept going down and down and down, sloping, never level, until it reached the end.  A long white room, with no tables or chairs.  It had a built in bench that ran along all the walls.  I took a seat in the corner.  I started to catch my breath and noticed others in the room.  One woman, three men.  One man looked like my high-school crush, and Tom Cruise all at the same time.  One man was elderly wearing a hat and the other was a younger guy with blonde hair.  The woman was young and pretty.  It felt as if we were going to live here for the rest of our lives.

Time moved forward and the younger woman and my high school crush guy had a baby.  The baby was so beautiful.  I was in awe of the child.  The couple did not love each other though, and she had secret feelings for the  younger blonde guy.  I waited one day to talk with the father to see if he would have an interest in me, but he did not.  He was not attracted to me.  My heart was crushed, I loved him.  The couple split and the baby stayed with the father.

While living in this shelter we could periodically go out of the room and get tea.  On one other special day we were able to bake a cake.  Periodically another child would appear to guide me to the tea room.  This child was 5 or 6, and would take my hand and ask me to get him some tea.  So we went for tea and it was a joy.  We all lived here for about  a year.

When the sun came out we were able to leave.  Outside in place of roads were train tracks.  The elderly man and I hopped on a push car, and made our way out of the city.  I looked back and saw smoldering buildings against a clear blue sky.  It was a beautiful day.

I woke up today at 3 pm.  This was my dream last night.  I slept for 14 hours.  It snowed in Seattle today.  

Off in the distance..............................

Mom's purple couch and in the middle is a seed pillow that warms me at night. This was given to me by my beautiful sister.  In the basket is a glimpse of a georgeous card made by my niece.

The coolest area rug, from mom.  Love this, it makes the room.

An old time view of SCCA.  I still pick up prescriptions from here and get to enjoy this amazing view.

The looming Seattle snowstorm awaits us, as cherish this moment of living.

I gaze off in the distance as I stand in the cancer center waiting room..  It's empty, quiet, yet behind the doors are patients hooked up to IV receiving deadly chemotherapy, to save their lives.  I'm here because I have to get more Lorazepam, it keeps me centered.  I started it while on Chemo because of the huge amount of fear of death and anxiety simmering in my soul.  Now, I think it will be with me forever.  I don't care.  I need it.

The photo of my mom's purple couch brings back so many beautiful memories from when she and her mate Haskell lived in Colorado.  We all grew up in Colorado.  I remember many nights lying across this comfy couch glued to CNN with them, as we discussed politics, world events, and stories from long ago.  Haskell was a treat, sort of like sweet inside but sour all around.  He was one of those highly intelligent people who seemed to know everything.  He constantly challenged me to do better by asking me all the time why I was doing something or supporting something.  Oh but he was one of the funniest people I have ever met...and he made my mom laugh.  He got my mom, he loved her and he took good care of her.  God Bless Haskell, even though he would not really want me to say that, I do, because he is an angel.

I missed today, and heard that it snowed in Seattle, and generally that is pretty big news.  I slept until 5:00 pm.....for the second time this week.  I am just tired or depressed or something,  I do think I am still recovering from all the extra work I did over the holidays.  Either way, although I love to dream, I am missing life too.

My dreams are so vivid.  I carry them from one night to the next.  Last night I dreampt that I lived in a "group home" with other young people.  We seemed healthy, so I don't know why we were there. The carpet was navy blue, and the lobby had gray vinyl chairs.  The walls that anchored the reception area were floor to ceiling pale blue.  The glass doors separating me from the receptionist slid back and forth, giving me a feeling that I was somehow captive, a prisoner.

Along that wall were giant post-it notes written by someone else, accusing me of ridiculing one of the other tenants.  They were huge notes, in yellow and pink.  They said things like "what about Gracie?"  "Sue is a liar"  "Denise did it"  ......I saw these and for some reason went behind the reception area to wash my hair.  For some reason the area had a salon-like hair washing station, and I had pain on my scalp.  The nurse said I could wash my hair, so I did and proceeded to blow dry my really long gray hair.  I desperately searched for a roller brush, and was relieved to find it.  As I had tossed my head upside down, and began to gently curl my locks with the heat of the dryer, I saw another with rollers in her hair, she was looking at me and laughing and then ran off when she saw that I'd seen her.

I ran out into the lobby, and there on the wall were more giant sticky notes that said to hate Denise.  Then all of sudden the lobby filled with other people and there was a girl named "Gracie" looking at them, and i turned around and the notes changed to messages to hate Gracie.  She was surrounded by people and she was crying.  They were protecting her. I felt "accused" but had done nothing.  Someone else was doing this evil.

She was taken to breakfast by a guy who looks like the guy named "Tony" from the show "24".  He wanted to get her away from the scene.

I begged her to trust me that we were being framed by someone in the home to make all of us hate each other.  Somehow I discovered it was an older woman playing tricks on us and I woke up.

If I close my eyes I can still see the whole event play back over and over.........weird.

As I sit here typing, I am compelled to tell you how I feel today.  I am feeling guilty because I did not make it to Church in several weeks, I have been exhausted.  I miss the service.

My tummy hurts so bad, like the band of my undergarments is too much to bear.  I am now wearing my TENS unit to ease the pain.

I desperately miss my family today.....and just realized that I am one of those people who needs me to be a joyful customer service agent.

I work from home and talk to people in the evenings about their problems with their products or what have you.  I love that because I get to talk to people..........

Yesterday I got lost on the way to a cognitive rehabilitation study class..........I was tweeked about not having a map, and felt set up to fail.  This is crazy of course, but anyway.......and thankfully got errands ran with mom before the storm hit today.

My hands are still swollen, but I did do some exercise this past week.

The only noise in the apartment is either the dryer winding around and around, or intermittent EWTN.  My cable is slow, and I have no live TV, except for KIRO TV news.

It's very odd to have no live TV.  It really is.

So I can't figure out if I'm depressed, run down, both or what.  Maybe I need to lay off the "24" reruns from ROKU/Amazon.

I think a kitty would help, but where oh where to place the box.

Thank you God for gifting my Uncle with 65 years of life and for helping my mom continue her dialysis.  For protecting my cousin Shaun from the wrath of cancer and for giving me a chance to be here.  I got to speak with my niece and nephew from Colorado, and my brother......got a call from my aunt and even got a call from a cousin in Colorado. She kinda sounds like me on the phone...........just noticed that.........hmm.

May the snows of tomorrow provide joy and no harm.  I love you all.

Love,
Denise

Cancer statistics, 2012 - Siegel - 2012 - CA: A Cancer Journal for Clinicians - Wiley Online Library

Cancer statistics, 2012 - Siegel - 2012 - CA: A Cancer Journal for Clinicians - Wiley Online Library

When will we stop patronizing the tobacco companies? Here is a new report on Cancer statistics, for those of you who like this kind of stuff. I don't like to look at statistics, because I don't want to be one. None the less, I am one, so I need to at least keep myself informed. No statistic has the power to rule your will and your love for live.

What I see here is that sadly, lung cancer still tops the list as the leading cause of cancer death.

Regarding ovarian cancer, it is commonly believed that our "new cases" stat is lower than what actually is true because it is still usually detected at later stages. So if all the early stage cases were found, we'd probably have more cases but also more survivors!!!!!

Peace,

Denise

Resources for our teal sisters, can you help?

I am a proud member of the Inspire.com community, a resource that brings people together.  Our ovarian group is in need of information about all resources that could help some of our sisters in need.  Although most of our sisters have loving family to support them or help during this crisis, many do not.  I was so blessed to have my family help me and cannot image going through this alone.


If you know of anything, local or otherwise, please send me information and I can give it to the group.


The hard part about using resources is first locating them, organizing them and then all the paperwork to apply for help.  Many ladies are in need.  We can do more.


Thank you followers...................


Resources from simple searches.............................

http://copingmag.com/cwc/index.php/resources/new_resources

http://www.cancersupportcommunity.org/mm/Learn-About/cancertype/Ovarian-Can cer/Resources-- 
http://www.ovariancancer.org/about-ovarian-cancer/introduction/

http://www.colo-ovariancancer.org/cancer_resources

http://www.cancerlinksusa.com/ovary/index.asp

http://www.northshorelij.com/NSLIJ/Cancer+Resources+on+the+Web_CI

http://www.michigancancer.org/Resources/FinancialResources.cfm

http://www.ontopofcancer.org/ovarian_cancer_financial_insurance_legal_drug. php

http://carycancercenter.org/PatientSupport/FinancialResources.aspx

http://ovariancancer.com/app/index.php?pid=11

http://www.ocao.org/partner_resources.aspx

http://www.facingourrisk.org/info_research/finding-health-care/financial-he lp/index.php

http://www.mfocf.com/

http://ovariancancer.about.com/od/livingwithcancer/a/ovca_assistance.htm

http://www.colo-ovariancancer.org/financial-resources

http://www.cancerlinksusa.com/financial_aid.htm

https://www.navigatingcancer.com/?ref=header

http://healthinfoispower.wordpress.com/ovarian-cancer-resources/

http://www.cancerindex.org/clinks3o.htm

http://www.health.ny.gov/diseases/cancer/ovarian/resources/groups.htm

http://www.ovationsforthecure.org/aware/aware_resources.php

http://www.sharecancersupport.org/

http://www.cancerindex.org/clinks3o.htm

http://www.mylifeline.org/

http://www.patientresource.net/?gclid=CIeBmcqrwq0CFcoaQgod-E4E-w

http://www.cancer.org/cancer/ovariancancer/index?gclid=CPe6mr-rwq0CFQR5hwod VwOn_g

http://connect.caringbridge.org/gp/cancer_dual?g=GoogleP&an=Cancer+Support+ Free&k=cancer%20support%20groups&gclid=CIeuor2rwq0CFRRZhwodUB5NAw

http://www.seattlecca.org/diseases/ovarian-cancer-resources.cfm

http://www.medscape.com/resource/ovarian-cancer

http://www.onconurse.com/factsheets/ovarian.html

http://www.ovarian-news.org/resources.html

http://www.cancer.gov/cancertopics/types/ovarian

http://www.cancercare.org/diagnosis/ovarian_cancer

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CMj3k4urwq0CFc YbQgoddTY3Ag

http://www.cancerandcareers.org/en

http://www.cancerlifeline.org/

http://www.dshs.wa.gov/dvr/Default.aspx

http://www.marsharivkin.org/

http://www.needhelppayingbills.com/index.html

https://livestrong-intake-form.heroku.com/page/1/

http://cancersensibilityfoundation.org/

http://beingcancer.net/

http://www.cancercopayrelief.org/


Maybe one of these will make a big difference for each of us. Peace and Blessings. Love, Denise

Happy New Year

I am listening quietly to the fireworks off in the distance.  I have no other noise in the background and it's so peaceful.  It is 12:47 am on January 1, 2012.  WOW

I think about you all the time, my loyal followers, who keep an interest in my progress.  I am so humbled.

You can survive ovarian cancer.  

What I had learned this past 2011 was that we need to push beyond our comfort zone, even when it hurts and even when we don't agree, because we must keep moving forward.  We must never stop moving forward. 

Never ever ever.

2011 was a very challenging year because this was the year that I had to move beyond the "cuddle zone" and get my life started again.  The physical pains, cognitive voids and emotional fears and hot zones are here to stay, but my love for God and my family grows stronger every day.

I have total and complete faith that what is, is as it should be.  I am here in this spot at this time.  For now.

I never would have made it through my valleys if I had been denied somehow the honor of having my blogger family support.  You are my link to share my innermost feelings, fears, joys and hopes.  My heart is filled with joy.

Thank you for your loyalty and care.

May God bring you deep joy, prosperity and health in 2012.

Keep your faith and grab onto hope with all your might.

Love, 

Denise

Oh Christmas Tree.........

My Teal Starred Christmas Tree is literally my little work of art.  I had no desire to get a fake tree and the price of a real tree was a wee bit over the limit this year.  I am in love with bamboo and came up with a crazy idea to get some red colored bamboo and create my own tree. Up at the top is a Teal star, it glitters and makes me smile.  The lights in the center flicker, and it resembles a heart, beating with joy.


My favorite holiday is really Christmas.  I love I love I love Christmas.  I love the LOVE that sort of lingers in the atmosphere.  I'm not going to rattle on and on about why do we focus on doing good deeds just during the holidays, when it needs to be every day.......I just feel like talking a bit.


Like most people, my family is scattered from here to there and we will be celebrating Christmas several times this year.  I remember the times long ago, maybe life was much simpler and less frenzied.  Our family, like most, has it's share of changes and griefs, and every year it seems it gets harder and harder to see everyone and do all the things you want because we have less time.  I just want to shut down for a few weeks and feel the grace of LOVE, be Love, and Rejoice in the coming of the Lord.


Oh well, that's me.  If nothing else, a daily siesta to take in the magic would be marvelous.

I do have something on my list this year, besides world peace and a cure for cancer.  It has to do with the homeless.  My heart aches always when I see that a person has no shelter.  How can this be?


Please send up a prayer for them.  Pray that someone in their family thinks of them and tries to find them. Pray that they find their way home.  Pray that they get the medical attention they need and that they can find a home. It takes an incredible amount of resources to bring anyone from homelessness to working and living a decent life.  But it's possible. These lost souls have someone who loves them who can do something to help.  If you have some food or a way to help them find shelter, please don't be afraid to help.  


I always give what I can when I see a homeless person.  They are so alone, especially at this time of year.  


I am so thankful to God to be present this year, 2011.  I am thankful to God for granting me health care, and for answering prayers for others in my family.  Our family has been hit pretty hard this year with medical challenges, and we need a break.  Thank you God.


I want to honor all of you who take a moment to listen every now and then, to tell you that I pray, in this time of Holiness, no matter your faith or beliefs, that you are blessed with health, security, love and hope. 


Peace and Blessings to each of you this Holy Season.


Love,
Denise

Thomas Merton Prayer

THOMAS MERTON (1915-1968)

The Merton Prayer In Thoughts in Solitude, Part Two, Chapter II consists of fifteen lines that have become known as "the Merton Prayer." MY LORD GOD, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone. - Thomas Merton, "Thoughts in Solitude" © Abbey of Gethsemani Thomas Merton came to me in the form of an educational booklet at the SCCA.  On a day when I needed help to know that I was moving in the right direction, far from perfect, and just needing to feel love, this prayer was sent to me.  It resonates with me and I think with most people.   Faith does not present itself as a provable absolute, but it does present as a deep sense of knowing we are accountable to more than just ourselves. His parents died of cancer and he struggled to find God.  I ask you to read a bit about him and pray that as this Christmas Season continues that you find more peace and faith in your heart.   http://www.mertoninstitute.org/aboutThomasMerton/tabid/57/Default.aspx

"When Cancer Hits Home" by Dr. Patrick Maguire

"When Cancer Hits Home" by Dr. Patrick Maguire

Hello to my blogger family. I hope all is well and that the sun shines brightly in your heart today.

I wanted to share with you a wonderful resource that helps people navigate the minefields of cancer-land.  It's called "When Cancer Hits Home" by Dr. Patrick Maguire.  I was honored to have had the opportunity to ask Dr. Maguire a few questions about Ovarian Cancer.

Dr. Maguire's book is detailed and yet broad enough to include information on many forms of cancer. All of us are damaged by cancer. Either we have it or love someone who has or is battling cancer.  Hopefully we are looking in the mirror and saying we beat it, but sadly that is not always the case.

When I was diagnosed with ovarian cancer, research was frightening. My family and I were thrown into research mode and it was very stressful.  Searching within the internet, contacting cancer resource centers, helping me ask questions.  I was constantly on the computer.  When I went to my local library there was only ONE book on ovarian cancer! We were overrun, beaten and confused by hunting for reliable and accurate, and mostly hopeful information.

"When Cancer Hits Home" provides a much needed guide as we enter this deep and often dark path towards treatment.

Here are the questions I had asked with the help of his publisher.

 Thank you Dr. Maguire for taking time to share your thoughts and expertise with me in the hopes that others can benefit from your work and your book.  

Peace

1.  Is Dr. Maguire willing to tell us details about current medical training for PCPs on Ovarian Cancer?  What kind of training do our medical students receive?

Most medical students' training in oncology is limited overall. Generally, third and fourth year med students learn from patients who have cancer during their internal medicine, surgical, and sometimes ob/gyn rotations. At major medical centers, students may choose an elective experience in medical, radiation, or surgical oncology including gyn onc. Interactions with patients who have ovarian cancer would be limited to these experiences for the most part. Since most primary care physicians are trained in internal medicine and family practice, their knowledge base and experience with ovarian cancer would also be limited. Most general gynecologists should have at least basic knowledge of ovarian cancer and interacting with patients in this regard, since they spend time during residency training specifically with gynecologic oncologists treating female cancers.  

2.  The trend seems to be to eventually divert gynecological follow-up back to a regular OBGYN when an OC survivor is in remission.  What is Dr. Maguire's position on this trend? 

Because ovarian cancer is generally found when advanced and has high risk of recurring/returning, immediate follow-up for at least the first few years should be with a gyn oncologist rather than general gynecologist in my opinion. When likelihood of cancer returning starts to decrease after few years, it's not unreasonable for patients to change their follow-up care back to their general gynecologist if more convenient and they are comfortable with gynecologists'  handling of their survivorship plan. 

3.  How can we teach family members and caregivers and even doctors and social workers about the chronic side effects of TAH-BSO and chemo? (total abdominal hysterectomy, bilateral salpingo-oopherectomy)

Because ovarian cancer is both less common and more deadly than breast cancer, for instance, general medical providers as well as the public have less understanding of the disease, its treatment, and potential long-term side effects. Patients, their families, and other advocates will need to continue to be vocal in this regard to spread the word and teach others (& get more research dollars for the cause!).

4. Does he recommend clinical trials for women who are in remission? 

I am a vocal proponent of clinical trials in general, because I firmly believe they're the best way to rapidly advance our understanding of cancer, its treatment, and move towards a cure. While most clinical trials are geared toward improving methods of treatment, there are many "symptom management" trials open for cancer survivors that can be quite beneficial. I usually tell my patients who are candidates for a clinical trial that "it may help you, and will definitely help future patients."

5.  How does a woman with ovarian cancer know she has a good gynecological oncologist?  What are the signs? 

In When Cancer Hits Home as well as my new eBooks, Empowered Against Breast Cancer and Empowered Against Prostate Cancer, I discuss the "Three C's of a Good Cancer Doctor." They are competence, compassion, and communication. Even gyn onc surgeons need to have all three C's to rate as good doctors in my book!  

6.  Any other advice? 

Raising awareness about ovarian cancer is critical because in cancer research, as in many aspects of life, "the squeaky wheel often gets the grease." It's no coincidence that dramatic advances in breast cancer have occurred during the past several decades of excellent funding of laboratory research, clinical trials, etc. While potentially more challenging for ovarian cancer, I'd like to see more rapid advancement of less toxic treatment options and an effective screening test for the disease. You are advancing that cause right now, which is very valuable!

Parick Maguire, MD

http://www.amazon.com/dp/0615391117/ref=rdr_ext_tmb

( I do not receive any payments from this link, I am just sharing it for your benefit in case you want to buy the book............Denise  Peace, Love  and Blessings to all)

Land of the Lost

Does anyone remember the first Saturday morning TV show called the "Land of the Lost"?  It opened with a dad and his two kids on a raft going down a waterfall and arriving in a land of ancient times.  Dinosaurs and reptiles and really big strawberries abound!  I feel like I am in the land of the "lost" still.  I know I've been harping on this chemo brain stuff but it's really annoying me.

First of all, every time I go to see my counselor, I get lost on the way there.  And to make it worse, because  I just moved, I go in the wrong direction all the time.

This IS Seattle though, so I don't take all the blame.  For those of you who don't know what it's like to drive in Seattle, it's a maze.  There are a lot of lakes and bridges and hills and there are no grids out here.  Streets are windy and go in all directions............so anyway.

I had another cognitive test done at Fred Hutchinson a few days ago, got lost on the way there, got lost in the building, and I've been to that campus only a million times.

Had to go downtown last night for work training, got lost on the way there, got lost on the way home.

I am having trouble with my new job because I can't remember how to search on their computer to research answers and solutions and information for my clients.  That is really worrisome for me...........not good.

It's so hard to explain that I can't "find' information quickly.......and then I forget how I got there.

It's like the homing device in my brain went kerplunk.  I'm sure there's a specific part of our brain that recalls visual tracking, I should remember that, but I don't.

Before chemo, my directional memory was awesome.  I am not gloating.  I used to drive all over the place and rarely got lost.  Plus, at work I was the person other's relied upon to remember appointments and important deadlines, etc.  I was a super organized person.

Now, I can't remember to make my to do list and when I make my to do list, I forget to use it.  Crazy.

Then, oddly enough, during the test, I was good at remembering numbers.  Weird.

I guess my concern is really about being able to stay in a good standing at work.  I had no idea that I would have such a hard time learning new things.  I was such a good student in college, and was able to memorize all kinds of things, no matter what kind of job I had.  I even did some community theatre for a bit, and that required an above average memory.  Sooooooooooo, all I can say is that chemo did a number on my noggin'.

I do have hope though that this will continue to improve over time.  But if I forget to do something or forget a name or forget an event, please forgive me.  I am not offended by reminders either, and welcome them as a matter of fact.

Like, the other day, after my cognitive testing, I met with a teal sister for coffee before getting mom at dialysis.  My friend asked me how my day was and I couldn't remember where I had been.  I laughed and said "I don't remember............wait..........oh ...........This is funny but I forgot that I went to do a memory test this morning".  I just laugh at myself now, but when it comes to work, that isn't funny..........aagh

Life could be worse...................I love you all!!!!!!!!!!!!!!!!!!!!!!!!!

Brain image compliments of http://www.pbs.org/

Something creative and beautiful

Here is a link to an Art Tutorial created by my sister.  I am so proud of her.  I thought I'd share something that brings joy today.  We all need art in our daily lives.  Art creates emotions and gives us life!  Art speaks truth.  Peace.

http://poppytalk.blogspot.com/2011/10/art-tutorial-drink-up-these-kitchen.html

I love you sis!

From NEJM on Drug shortages

Perspective

The Shortage of Essential Chemotherapy Drugs in the United States

Mandy L. Gatesman, Pharm.D., and Thomas J. Smith, M.D.

N Engl J Med 2011; 365:1653-1655November 3, 2011

 Comments open through November 9, 2011

Article

References

Comments (8)

For the first time in the United States, some essential chemotherapy drugs are in short supply. Most are generic drugs that have been used for years in childhood leukemia and curable cancers — vincristine, methotrexate, leucovorin, cytarabine, doxorubicin, bleomycin, and paclitaxel.1 The shortages have caused serious concerns about safety, cost, and availability of lifesaving treatments. In a survey from the Institute for Safe Medication Practices, 25% of clinicians indicated that an error had occurred at their site because of drug shortages. Many of these errors were attributed to inexperience with alternative products — for instance, incorrect administration of levoleucovorin (Fusilev) when used as a substitute for leucovorin or use of a 1000-mg vial of cytarabine instead of the usual 500-mg one, resulting in an overdose. Most cancer centers quadruple-check drugs for accuracy, and we're unaware of any documented death of a patient with cancer such as the nine deaths in Alabama attributable to the use of locally compounded liquid nutrition because the sterile product was not available. However, it is only a matter of time.

These shortages have increased the already escalating costs of cancer care. Brand-name substitutes for generic drugs can add substantial cost. For instance, Abraxane, a protein-bound version of paclitaxel, costs 19 times as much as equally effective generic paclitaxel (see tableAverage Wholesale Prices (AWPs) of Selected Oncology Drugs in Short Supply and Their Potential Alternatives.). Since 2010, health care labor costs in the United States have increased by about $216 million because of the increased time and work required to manage drug shortages.2 A gray market for essential drugs — an unofficial alternative market of drugs obtained by vendors outside the usual distribution networks — has grown rapidly, with unregulated vendors charging markups of up to 3000% for cancer drugs.

The main cause of drug shortages is economic. If manufacturers don't make enough profit, they won't make generic drugs. There have been some manufacturing problems, but manufacturers are not required to report any reasons or timetable for discontinuing a product. Contamination and shortages of raw materials probably account for less than 10% of the shortages. In addition, if a brand-name drug with a higher profit margin is available, a manufacturer may stop producing its generic. For instance, leucovorin has been available from several manufacturers since 1952. In 2008, levoleucovorin, the active l-isomer of leucovorin, was approved by the Food and Drug Administration. It was reportedly no more effective than leucovorin and 58 times as expensive, but its use grew rapidly. Eight months later, a widespread shortage of leucovorin was reported.

The second economic cause of shortages is that oncologists have less incentive to administer generics than brand-name drugs. Unlike other drugs, chemotherapeutics are bought and sold in the doctor's office — a practice that originated 40 years ago, when only oncologists would handle such toxic substances and the drugs were relatively cheap. A business model evolved in which oncologists bought low and sold high to support their practice and maximize financial margins. Oncologists buy drugs from wholesalers, mark them up, and sell them to patients (or insurers) in the office. Since medical oncology is a cognitive specialty lacking associated procedures, without drug sales, oncologists' salaries would be lower than geriatricians'. In recent decades, oncology-drug prices have skyrocketed, and today more than half the revenue of an oncology office may come from chemotherapy sales, which boost oncologists' salaries and support expanding hospital cancer centers.

Before 2003, Medicare reimbursed 95% of the average wholesale price — an unregulated price set by manufacturers — whereas oncologists paid 66 to 88% of that price and thus received $1.6 billion annually in overpayments.3 To blunt unsustainable cost increases, the Medicare Modernization Act mandated that the Centers for Medicare and Medicaid Services (CMS) set reimbursement at the average sales price plus a 6% markup to cover practice costs. This policy has reduced not only drug payments but also demand for generics. In some cases, the reimbursement is less than the cost of administration. For instance, the price of a vial of carboplatin has fallen from $125 to $3.50, making the 6% payment trivial. So some oncologists switched to higher-margin brand-name drugs.4Why use paclitaxel (and receive 6% of $312) when you can use Abraxane (for 6% of $5,824)?

Now practices are struggling to treat their patients because of the unavailability of drugs. Short-term solutions include gray-market purchases, which more than half of surveyed hospitals say they've made, but that option introduces safety and quality-control issues. Pharmacists are intensively managing inventories and alerting prescribers to developing shortages and potential alternatives. Some centers now have a red–yellow–green system for quickly recognizing developing shortages and determining which patients get priority (usually those with curable cancers) when supply is limited.

Long-term, non–market-based solutions have been elusive. Proposed legislation would require manufacturers to give 3 to 6 months' notice before discontinuing a drug in order to allow others to pick up production. However, it is likely that gray-market vendors would buy the remaining inventory of such drugs and charge huge markups. Creating a national stockpile is impractical: Do we stockpile the drugs and then waste whatever is not used or stockpile the ingredients and make new batches as needed? A national health care plan with a single formulary and a central pharmacy stockpile is possible for Medicare or Veterans Affairs but unrealistic given oncologists' dependence on drug income and difficulties with timely, safe distribution.

Market solutions take one of two approaches: let the market work and accept short-term uncertainties or regulate the market more tightly. For instance, the CMS could reimburse at the average sales price plus 30%, but that wouldn't help if the drug price has fallen from $125 to $3.50 per vial. The government could set a floor for average sales prices to encourage the production of generic drugs, but that would increase the total cost of cancer drugs unless brand-name prices were reduced. Europe has fewer shortages for that reason: prices are set higher for generics so that companies will make them, but prices of brand-name drugs are often much lower than U.S. prices.

More far-reaching reforms of oncology practices and reimbursement are necessary if there is no national intervention or federal market regulation. One solution is adopting clinical pathways for which practices are paid disease-management fees that are not based on chemotherapy sales. For instance, one large oncology group has developed care pathways specifying preferred drug combinations and sequences — for example, allowing only a few first-line, mostly generic regimens for patients with non–small-cell lung cancer, as compared with the 16 possible drugs and many more combinations included in National Comprehensive Cancer Network pathways. This approach has been shown to result in equal or better survival, less use of chemotherapy near the end of life, and 35% lower costs than usual care.5 Another solution is to pay physicians salaries, as Kaiser Permanente, Veterans Affairs, and most academic centers do, but that would reduce oncologists' earnings at a time when a 40% workforce shortage is predicted, so the effect must be monitored.

To ensure a predictable supply of generic cancer drugs, manufacturers need reasonable markets and profits, and oncologists need incentives to use generics. Standardized clinical pathways with drug choices based only on effectiveness will enable the prediction of drug needs, practices for effective management of inventory, and planning by manufacturers for adequate production. Such pathways, disease-management fees, and physician salaries would dramatically change oncologic practice, but since drug costs will increase by 4 to 6% this year alone, they are necessary. The current system not only is unsustainable but also puts oncologists in potential ethical conflict with patients, since it hides revenue information that might influence drug choices and thus affects costs and patients' copayments.

The only good news is that the drug shortages may catalyze a shift from a mostly market-based system to one that rewards the provision of high-quality cancer care at an affordable cost.

Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.

This article (10.1056/NEJMp1109772) was published on October 31, 2011, and updated on November 2, 2011, at NEJM.org.

SOURCE INFORMATION

From the Virginia Commonwealth University Health System, Richmond (M.L.G.); and the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins Medicine, Baltimore (T.J.S.).