CDC Symptom Diary Card

Thursday, February 28, 2013

MUGA scan tomorrow

I remember we'll the days of my young adulthood when the only reason I didn't travel or do more was because I didn't want to use up all my vacation.  Being naive I thought those kinds of sacrifices would protect me somehow from injustices in the world of work.    Hence, no trip to Hawaii, no cruise, no east coast bed and breakfast tour in the fall.  

I also recall wondering if I had made the incorrect degree choice for college.  I wanted to help people, but not break my back doing it.

How could both of these problems be avoided for other young people?

Encourage them to volunteer doing something related in the same or similar industry, before college. Help them land an unpaid internship the summer of their freshman year in high school.  

Really risk it and see if they can wait one year after graduation to either do an internship or travel and work in a job similar to the career they are saying they want to do.

If we wait to do our heavy and important life building travel until we are older, our bodies may not be up to the task.   I'm just saying.....

I have a MUGA scan tomorrow at SCCA.

I have been on Chemo for a year.  

I am so tired.    I need 12 to 14 hours of sleep per day.  I start to feel a tired again after being up for about 8 hours.  My body broke out in the last few weeks with all kinds of blisters, yuck.    That is also from the chemo.   Oh happy day.

Will post again in a few days.    Next chemo is March 4th.

Had the best time with mom over weekend watching Flight and Beasts of the Southern Wild.  Next is Argo.

love you all lots and thanks for checking in


Tuesday, February 19, 2013

La La La La La La La La Laaaaaaaaaaaaaaaa

Below is a copy of an interesting article about a pilot study on the effects of music on the health of cancer patients.  I am expecting that it will show that people believe to feel better and hope that it will reveal some form of stabilization on the effects of medications.  Even better, a reduction of the negative side effects.

To give you an idea, during chemo you are very fortunate if you are receiving your medications in an area that can be closed off and kept quiet.  I know that when I get the opportunity to have a bed and a door I am much more relaxed.  It is really stressful to hear all the beeping IV alarms and nursing call buttons, other people's TVs and music and conversations and people going up and down the halls.

When the room is quiet, it makes an amazing difference and is very calming.  If the environment could be even more improved to offer music, it could help alleviate bad side effects and distract someone from anticipation of side effects as well. (I have an Ipod given to me by my brother, but I forget to bring it sometimes.) 

I can also say though for me that 90% of the time I'm sleeping through the bulk of chemotherapy, even if I have not been given benadryl.  I am so chronically tired that when I can sleep in a comfy bed and not have to worry about anything because the nurses are right there, I can relax too.  I slept 15 hours or so on Sunday again, slept til 1:00 pm today.

I remember when mom was going to dialysis and I just felt terrible for her and the other patients.  The dialysis machines sound like slot machines.  No joke, not at all.  The volume cannot be turned down.  Each person on dialysis cannot move their arm during the transfusion.  Slight changes in movement or flow or anything cause the machine to sound an alarm, and they sound off constantly.

I am so glad she isn't needing that right now.

Anyway, I digress.  I wanted to share this interesting pilot study with you because maybe you can find a way to incorporate music into your life in a therapeutic way if you are receiving chemotherapy or have any major stress in your life.  



Study investigates whether music therapy reduces stress in cancer patients

Published on February 19, 2013 at 9:20 PM 

A Saint Louis University Cancer Center pilot study is investigating whether music affects the health of cancer patients by soothing them and making them less anxious.

"We can see that some of our cancer patients who are undergoing treatment are showing signs of stress because their blood pressure is higher and respiration rate and pulse is faster than normal. Our goal is to see if music can help bring those vital signs into a more normal range," says Crystal Weaver, SLU Cancer Center's music therapist and a study co-investigator.

"There are a lot of reasons cancer patients feel anxious when they come in for treatment. They may be dealing with unpleasant side effects of medications, such as hair loss or nausea

Sometimes they are thinking about how their illness impacts their family and finances and their ability to continue working. We want to find the best way to use music, which may not cost as much as other therapies and has no negative side effects, to help reduce their anxiety."

The study looks at three groups of cancer patients - those who hear live music performed during chemotherapy infusions; those who receive music therapy in their hospital or exam rooms; and those who do not have music as part of their treatment.

Researchers will measure the study participants' body responses - blood pressure, pulse and number of breaths taken per minute - and note their answers to a questionnaire developed by psychologists to detect stress. For those patients in the music groups, measurements will be taken before and after they hear music while they are receiving treatment.

Some study participants will hear musicians from the St. Louis Symphony, SLU School of Fine and Performing Arts students and Maryville University music therapy students, who play music in SLU Cancer Center's infusion room.

Others will be able to choose the music they want to hear during a one-on-one session with a music therapist.

"Patients request anything and everything - country, religious, musicals, music that was popular when they were in their teens and 20s. I take the music they like and play it at 66 beats per minute because previous research shows that tempo helped well adults relax," Weaver said.

"A pulse of 60 to 72 beats per minute is considered normal and we're hoping to match our study participant's pulse to the beat of the music. Once the heart rate begins to slow, the patient is more likely to take deeper, slower breathes and his or her blood pressure could drop to a healthy level."

The phenomenon of synchronizing the rhythm of the music to a patient's heart beat is called entrainment. It occurs when one person matches the pace of another so they can walk together or when the pendulums of two clocks near each other swing in the same motion.

Participants in the one-on-one sessions also will receive a specific type of empathetic, nonjudgmental therapy that opens patients up to participate in art and movement therapy with good results, Weaver added.

If the study shows that after music therapy, the pulse, blood pressure or respirations per minutes drop or patients' scores on the questionnaire to detect anxiety improve, more research into the benefits of much therapy will be justified, Weaver said. Future research could hone in on how much anxiety levels decreased after music therapy and how reduced anxiety affects a patient's recovery time, complications and willingness to comply with treatment.

The SLU Cancer Center is the only cancer center in the area to have a full-time music therapist on staff and the first to establish a partnership with the St. Louis Symphony.
Mark Varvares, M.D., SLU Cancer Center director, received a national award in October for his advocacy work for music therapy from the American Music Therapy Association.
Varvares is the principal investigator of the study.

"While there's anecdotal evidence that patients who have music therapy after surgery need less pain medication, this research project is among our first to explore the connection between music and healing," Varvares said. "The pilot cancer music therapy study is a step toward helping us to better understand music's effect on health."

Source: Saint Louis University Cancer Center

Medical News

Monday, February 04, 2013

'Master' proto-oncogene regulates stress-induced ovarian cancer metastasis

A quote from the article:
"Building on the Stress-Cancer Connection For the past 13 years, Sood's research efforts have focused on the effects of chronic stress on cancer metastasis. The latest study helps form a more comprehensive picture on the impact of and biological mechanics of chronic stress on ovarian cancer, as well as the role of beta blockers in slowing disease progression. Previous studies have shown:"

I am sort of obsessing a bit on stress, cancer, and how much we need to understand about cancer growth.  The article is very interesting and hopefully will motivate all of us to find ways to better manage our stress.

I have my chemotherapy tomorrow and wonder if there has ever been a valid and reliable study where participants were allowed to stay in some sort of retreat, far away from worries and agitators.  Would it show significant benefit in comparison to others of same cancer type and age range?  Hmmmm

Better yet, lets just assume that stress always makes cancer worse and build up resources for patients, family, caregivers and treatment facilities to simply offer more options to reduce and prevent stress.  Why wait for more research on this?  

We can feel that stress hurts us.  Cancer is a major source of stress on it's own, for the patient and all who love them.  The fear of death, the anger, the pain, the losses.  

Not long ago I thought "That's what I'll do, I'll start a foundation that raises money to build little health getaways all over the world so people who are sick can get break from this madness".  I have no energy for that, but it's a great dream.

I would never turn down an opportunity for our family to have an all out get together at a beautiful place away from the chaos, for just a moment in time, to heal our souls, laugh and play once again. But no matter where we go, we take our pain and our fears with us, unless we find a way towards inner peace.  


I will dream of paradise, heaven on earth and try to remember what my body felt like when I was a kid.  I will think about what it's like to be a little baby or toddler, and laugh at all that is silly.  I will think of my family and embrace love.  I will feel the love of God and believe in His healing.  I will have faith. I will keep finding more ways to forgive and pray for forgiveness of my own sins.

Your faith may not be my faith, but not the matter, for it is based in Love.  

On a side note:

I may watch "Love Actually" later in the week, maybe before work, too.

It reminds me of the last time I saw it.  My sweet sister had come to Sacramento after my initial debulking surgery and one night we just watched the movie.  I was in terrible pain and could not walk down stairs. I was stuck up in my rented room.  Being with her, getting a much needed reprieve from cancer talk, watching this amazing gem of a movie is one of my most treasured memories.  

Good night and love you all.


Friday, February 01, 2013

Talking about Death....And Living

 I have a very special and dear friend in California.  She knew me before cancer and before cancer I can honestly say I felt like she was a soul sister.  She was my confident and teacher.  She still is to this day.  When we talk the calls grow into discussions of "important" matters, God, Helping, Living, Peace, Being a change agent in some capacity, doing the best possible, living art, being art, laughing at what cannot be changed and finding love and joy in whatever comes.  

Griefwalker by Tim Wilson, National Film Board of Canada

She posted a private message on Facebook of a fascinating video about palliative care.  I respect that for some it may not be something you want to see, but if you can, listen.  I felt a sense of peace about death after the video, just a little more peace.  That peace is priceless.  Healthy or not healthy, I believe this short film will bring you something good.

My dear friend brought something very good to me and I want to thank you so much  Barb!  Hugs and Peace to you.  

To you my dearest readers and followers, my heart is with you.