CDC Symptom Diary Card

Monday, December 19, 2011

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

Wednesday, December 07, 2011

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.  


Saturday, November 19, 2011

"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





( 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)

Thursday, November 10, 2011

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/

Friday, November 04, 2011

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!