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Sunday, April 21, 2013

Look For The Helpers "Mr. Rogers"

A day to remember, when the good people rushed in.  

On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon.  Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured.  By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police. 

Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process.  Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.

The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line.  The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April.  It was a beautiful day for this most beloved day in Boston.  

We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able.  God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.  

When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA"  over and over.  We will never back down, ever.

God Bless America

From the webpages:
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.

In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"

President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."

In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:

You’ve shown us, Boston, that in the face of evil, Americans will lift up what’s good. In the face of cruelty, we will choose compassion. In the face of those who would visit death upon innocents, we will choose to save and to comfort and to heal. We’ll choose friendship. We’ll choose love.

Scripture teaches us, “God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” And that’s the spirit you’ve displayed in recent days.

When doctors and nurses, police and firefighters and EMTs and Guardsmen run towards explosions to treat the wounded -- that’s discipline.

When exhausted runners, including our troops and veterans -- who never expected to see such carnage on the streets back home -- become first responders themselves, tending to the injured -- that’s real power.

When Bostonians carry victims in their arms, deliver water and blankets, line up to give blood, open their homes to total strangers, give them rides back to reunite with their families -- that’s love.

That’s the message we send to those who carried this out and anyone who would do harm to our people. Yes, we will find you. And, yes, you will face justice. We will find you. We will hold you accountable. But more than that; our fidelity to our way of life -- to our free and open society -- will only grow stronger. For God has not given us a spirit of fear and timidity, but one of power and love and self-discipline.

After the service, President and Mrs. Obama stopped by Boston's Cathedral High School to thank some of Boston's first responders and volunteers for their tireless efforts over the past few days, and then the President visited patients, their families and hospital staff at Massachusetts General Hospital, while the First Lady stopped by Boston Children’s Hospital and Brigham and Women’s Hospital.

You can watch President Obama's remarks below or on YouTube:

Tuesday, April 09, 2013

PTSD And Breast Cancer, Study Opens Healing Doors

Each day brings a repeat of a series of events that are predictably unpredictable.  A battle waged not by me but from deep within my mind, an unhealthy response to the fear of death.

Amended April 16, 2013

For several nights last week I had nightmares. One night it was about a gunman in a shopping mall. I plan to write out the dream in a separate post. I really enjoy doing the writing, not so much experiencing the nightmare. The next night another nightmare about my life as a member of the poorer community, and how being in the lower ranges of the rungs on the ladder has created a bit of unwanted stress. Not in the way of having or not having beautiful possessions, but in a way of the struggle for basics. I don't want to leave this earth in debt, and well, not sure what els to say there.

So I saw my psychiatrist yesterday and after further detailing my experiences, a more prominent concern is a Panic Disorder. I had some confusion because I have nightmares on a regular basis, but it was only for a few months after my diagnosis and surgery that I was fearful and enraged. So stress, trauma, potential PTSD would have been short term......but went unaddressed. My rage was a real barrier for me.

Thank you for listening...back to the article.....

Recent research has spoken of such things when it comes to breast cancer.

JNCI J Natl Cancer Inst
doi: 10.1093/jnci/djt024
First published online: February 21, 2013

Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.

I am not surprised at all, cancer of any kind is traumatic.  If you know me you know I am wondering when this type of research wii be done with females who are diagnosed with ovarian cancer.

If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer.  Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.

It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it.  I was told three times that I was too young for this deadly disease.

Well this disease is much less deadly if caught early.

So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer.  And awe shucks I sure am sorry.  And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.  

Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics.  Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.

Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.

I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.

If I can find a peaceful space to allow myself time to connect the dots and move from "why" to "how" and "what", I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.

I was recently diagnosed with Panic Disorder. It took a very long time to figure out what was going on.  I was much more angered than some because I had asked the questions and was denied a CA125 in California.  Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.

Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety.   Loss of the future. Serious stuff for any person to handle.

For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss.....pain pain pain and repeated assaults on our bodily functions and mind.

I got punched in the stomach the day after my debulking surgery.    I have said this many times, I find the irony classic.    Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.  

How it happened was a technician came in my room to take my blood pressure.  My right arm was used.    The cuff was a bit too big, but she secured it tightly.    After reading the pressure she allowed all the air to escape from the arm cuff.  My little arms were not in the way of the tech simply sliding the cuff off of my arm.  There was plenty of room and usually that is what the techs or nurses do.   This gal was bent on unwrapping the cuff.  Velcro always wins and in this case nothing different would have happened.   Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen.   I heard a wailing sound come out of me that has never since returned. It Hurt Like hell. It hurts to wear a bra to this day.

I yelled and screamed and cried and cursed and and and.   They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain.   It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.

Now with the evolving diagnosis of Panic Disorder, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely.  It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.

I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.

For the longest time it was thought that I was just having hot flashes.  Hot flashes are not normally precipitated by severe abdominal pain or nausea.

What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this Panic Disorder.    Maybe my medications will be changed, not sure.

The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.

Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.  

I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR.   I do not want stronger meds right now.  My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can.    I trust in her.  I trust in God I will now also be adding another medication to help.

If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.

You are free to post them in the comments section or you can follow me and send me a private email.

Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.

God Bless You

Monday, April 01, 2013

Gynecology Oncologist the Only Surgeon For Us

The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt

Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.

I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.

I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....

My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.

Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.

My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.

A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.

Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.

He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.

Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.

My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.

So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.

Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY

My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.

During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun

The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.

I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.

I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.

Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.

Thank you God for my loving family and friends. Thank you Arnie.

It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.

If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.

So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.

My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.

One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.

I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.

Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.

I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.

A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.

Happy Easter and much love to my family and friends.

I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.