I go by #Servivorgirl. Celebrating almost 14 years since diagnosis of stage IIIC ovarian cancer, recently restaged to IVB. My blog is called Nobody Has Ovarian Cancer because I felt like a nobody upon the eventual correct diagnosis. Being told multiple times that I was too young to have ovarian cancer, I did not receive the proper testing. I am so grateful to Him for all those who allow me to share my love, to those who love me and those who treat my illness. I praise Him always.
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. http://www.cancer.net/all-about-cancer/cancernet-feature-articles/-tests-and-procedures/muga-scan-what-expect
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
Denise
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.
Love,
Denise
.........................................................
Source: http://www.news-medical.net/
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.
Love,
Denise
.........................................................
Source: http://www.news-medical.net/
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
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.
Forgiveness
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.
Denise
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.
Sunday, January 13, 2013
Change Is Certain
My sweet Marilyn, exhausted after watching over me literally all of Saturday into Sunday. She never leaves my side when I'm really sick. My sweet kitty kat... |
Here I am, listening to an MP3 of the Album from "Love Actually." Not the original artists, but it will do. The music from this movie is so perfect, actually. I needed to give myself some down time this evening to partake in an activity not related to cancer or paying bills or cleaning. Over the years I have neglected music, neglected listening to music that makes me happy or want to dance. I have not a clue as to who is hip or popular right now. I used to know all that stuff, but after I got cancer I just lost interest.
Balance is lacking in my life, so one area in desperate need of attention is music, so here we go. I added the amazon cloud player to my roku and will be streaming my favorites, in addition to using Pandora more. Gee, I remember in the early 90's I must have had hundreds of CDs, some old vinyl and even a few 45rpm records. I miss them.
I knew all the songs on all the albums and CDs. I knew the good stuff, not the stuff that got air time, but the real music that you had to look for. It was easier then too. No programming and uploading and downloading and managing a playlist. It was called a record or a CD. You either popped it on top of the record player or put the CD in the CD Player. But, we must adapt to change, whether it's in how we listen to music or cope with an ongoing medical challenge.
I had chemo last Tuesday, after CT scan on Monday and oncology appt prior to chemo on Tues. Last week was just plain old busy. Had to work too and go again to the cancer center on Thursday for hydration and neulasta.
Regretting not getting the extra IV of Emend. It was scheduled for day 5 or 6 post treatment and we weren't there yet. I felt like I was managing, so I went ahead and let it go.
Just like clockwork, I woke up Saturday morning, feeling like a clamp was on my head, nauseous, barely able to get up for water and meds. Slept through to Sunday noon, except to call work twice to call in sick.
It is Sunday night, feeling queasy, but able to be up. My sweet mom bought me some soup, mashed potatoes and flowers. How sweet.
So what did the doctor have to say, you may be wondering?
Well, she had great news! On Lipodox, my tumors are slowly either shrinking or have stopped growing. Progress is defined that we are reversing a trend. We discussed in detail my quality of life, because this last treatment was the 11th treatment in a row. How am I doing on Lipodox was the key question for me to answer. My question was "how is the Lipodox doing?" Everything was clearly answered and I feel good about my decision. I will continue on Lipodox for 2 to 4 months at least. Will see oncologist again in March.
I can manage the side effects, but not without "help". I can't work more than part time and sleep all the time. I do have the option to halt treatment to give me a break but she was fairly clear that if I stopped, even for a bit, I could develop a resistance to Lipodox. That would leave the tumors alone to continue on their path of destruction, not the best idea for now.
I am going to do all I can to support the chemo, possibly ridding my diet completely of process sugars/carbohydrates.
So as I look at my lovely Christmas Tree, listening to "both sides now", I am feeling once again that I need to re-establish my footing. After I take down the tree and tackle some paperwork this week, I am going to work harder on the basics. Sleep, exercise, nutrition, happiness where I can provide it and receive it. Spiritually I feel less whole. Only because I have not gone to mass often enough.
So for those of you who are effected by ovarian cancer (any cancer), first time or recurrence, things change. For better and for worse, it is constant. I have learned since the fall of 2009 that there are predictable outcomes, but may outcomes are positive. I don't put myself in a box anymore, but being too aware of statistics hinders me a bit. Oh well, have to be informed. What I am trying to say is to set aside what doesn't matter, keep good notes and be open and flexible. Trusting your medical team is critical in this process. I fully trust my gynoc-oncologist.
My prayers were answered. Last Tuesday I asked God if he would be kind enough not to give me bad news. I literally said that if the tumors are still there, that is OK, as long as they aren't growing. God is Good.
So the plan is to take each treatment one month at a time, do the best I can to live a healthy life and continue to pray and seek support as needed. I am also getting some additional help for little panic issues, which is very valuable.
Mom is healing, life is getting more stable and all I want is for my family to find peace, joy and love.
I pray each of you find a way to cope with certain change that comes with each new day of our lives.
Love you much,
Denise
Wednesday, January 09, 2013
Sunday, January 06, 2013
Patches of Blue
The warehouse was grim and dark. Round tables covered with tattered cloths were scattered throughout. The large room was divided into one third and two thirds. At each table sat someone that I had somehow met in my life, many of whom I did not remember. The attendees were all decked out in fancy clothes and sparkling jewelry. Each looked at me as I moved through the room.
I saw one man with diamond rimmed eye glasses and a white suite. Everyone had aged at least 20 years since I had seen them last. One group of people walked by, and in the center was an old crush, he still had the same blue eyes and striking white hair. He walked past me, glanced at me, and then continued as if we had never met.
One of my very best friends had lost a bunch of weight and she donned a golden dress and glamorous hat. She walked to the back of the room and into the smaller third of the building. Just as did my old crush and several other people who I deeply cared for. As the ones I knew closely went to the back and out of view, the one's I did not recall seated themselves at the tables in the front two thirds of the room. The walls were not painted and the floor was cracked. One long bench ran the length of each wall.
On the benches were men with knives and women who carried bright blue books and little blue patches that looked like band aids. I would find out that the patches were the difference between life and death.
I stood there for the longest time and watched carefully as each person entered the room, and I watched where each either sat or disappeared into the back. My sweet kitty cat Marilyn was with me, in my arms, watching over me, like she always does.
One of the men stood up from the bench and said something to me in a language foreign to me, and it was not something good. I became very fearful as he grabbed me and put me in a choke hold. I could see a knife coming into view from behind and knew he was going to slit my throat. Just as he was about to cut me, one of the women with a blue patch and blue book waved her hand at him and quickly placed the patch on my neck. The monster stopped and backed away in anger. I was shaken and scared. I ran off towards the back of the room and the patch fell off of my neck.
Just as it hit the ground, another man grabbed me and tried to use his weapon on me, just exactly same way. I felt like I was in one of those wicked video games, the hunted one, the prey. My attacker was not human, more of a robot, mechanical in nature. Each time as before, a black scarfed woman placed a blue patch upon my neck and the attack was stopped. The man would sit back down and glare at me. All of these attackers were following me, each with a knife.
These attacks happened repeatedly as I walked from the front of the room towards the back of the room to be with the people I knew. With each blue patch only lasting a few moments, I was quickly attacked over and over and over and over.
Exhausted and frazzled to the bone, I finally entered the back room. I was carrying my cat and as soon as we crossed into the safe zone, she jumped out of my arms and disappeared into a fog.
The smaller room was freshly painted, and filled with my friends who were laughing and having a good time. My old crush was off in the corner with his girlfriend and my old friend was dancing in a conga line, still wearing her golden dress and hat. We will call her Kairee.
Kairee had changed her life from when I had known her a long time ago. She was very happy now, after losing weight. She now was happily married and owned her own mortgage company. She pulled me aside and said she wanted to give me a chance to get back on my feet. She offered me a job but my heart sank because I hated sales and had done this before. I was not good at things like this, having never been successful at any job that was purely for the money. I knew I would fail. I had no choice though and could see that she was doing well, was stable and wanted for nothing. So I accepted her offer.
My office was downstairs and she pointed me to an old wooden staircase deep in the fog. She sat at her table, the room turned dark green, and her associates surrounded her wearing their black suits and high end shoes. I did not receive a warm welcome, except for from Kairee. She hinted not to worry and I went down the stairs.
The steps were many, probably over 20, straight down into the darkness. The whole room was old, wooden, dusty and filled with furniture and broken crates and boxes. A few light bulbs hung from the ceiling as I stumbled across what I could see as a floor. I was lost and became swallowed up in the dungeon.
I became fearful that my cat Marilyn would never be found again, as I had seen her disappear in that fog and knew she had come down these stairs. As I frantically started searching for her and calling for her over and over, screaming as loud as I could, "here kitty kitty, Marilyn where are you?", dozens of other cats appeared from out of nowhere.
Each cat had a feature similar to sweet Marilyn, but she was not in sight. Each time I saw a cat, I would run up and try to catch it and see if it was her. It felt like an eternity and I became exhausted looking for her. I scrambled all over the place looking and looking and found myself running from the mechanical men with knives. Once again being attacked and then saved by a blue patch.
While looking for my cat, one of Kairee's associates appeared to me and threatened me, saying I was not going to be approved by the company insurance policy and would not stay employed for long. I was losing everything, my job, my cat, and fearing the loss of my life over and over.
Off in the distance was a fluffy old couch, maroon colored, made with cotton cloth.
I pulled away the musty cushions and found my kitty cat and pulled her safely up in my arms. Just as I did this my cell phone rang. It was my brother asking how I was doing. Thank God he called and woke me up from that awful nightmare.
I went back to sleep and did not wake up again until 5:30 pm. That was my day today. I have a CT scan tomorrow. See my oncologist and get chemo on Tuesday.
Can't get that nightmare out of my head............sigh.
Hope you all had a better day...ha!
I saw one man with diamond rimmed eye glasses and a white suite. Everyone had aged at least 20 years since I had seen them last. One group of people walked by, and in the center was an old crush, he still had the same blue eyes and striking white hair. He walked past me, glanced at me, and then continued as if we had never met.
One of my very best friends had lost a bunch of weight and she donned a golden dress and glamorous hat. She walked to the back of the room and into the smaller third of the building. Just as did my old crush and several other people who I deeply cared for. As the ones I knew closely went to the back and out of view, the one's I did not recall seated themselves at the tables in the front two thirds of the room. The walls were not painted and the floor was cracked. One long bench ran the length of each wall.
On the benches were men with knives and women who carried bright blue books and little blue patches that looked like band aids. I would find out that the patches were the difference between life and death.
I stood there for the longest time and watched carefully as each person entered the room, and I watched where each either sat or disappeared into the back. My sweet kitty cat Marilyn was with me, in my arms, watching over me, like she always does.
One of the men stood up from the bench and said something to me in a language foreign to me, and it was not something good. I became very fearful as he grabbed me and put me in a choke hold. I could see a knife coming into view from behind and knew he was going to slit my throat. Just as he was about to cut me, one of the women with a blue patch and blue book waved her hand at him and quickly placed the patch on my neck. The monster stopped and backed away in anger. I was shaken and scared. I ran off towards the back of the room and the patch fell off of my neck.
Just as it hit the ground, another man grabbed me and tried to use his weapon on me, just exactly same way. I felt like I was in one of those wicked video games, the hunted one, the prey. My attacker was not human, more of a robot, mechanical in nature. Each time as before, a black scarfed woman placed a blue patch upon my neck and the attack was stopped. The man would sit back down and glare at me. All of these attackers were following me, each with a knife.
These attacks happened repeatedly as I walked from the front of the room towards the back of the room to be with the people I knew. With each blue patch only lasting a few moments, I was quickly attacked over and over and over and over.
Exhausted and frazzled to the bone, I finally entered the back room. I was carrying my cat and as soon as we crossed into the safe zone, she jumped out of my arms and disappeared into a fog.
The smaller room was freshly painted, and filled with my friends who were laughing and having a good time. My old crush was off in the corner with his girlfriend and my old friend was dancing in a conga line, still wearing her golden dress and hat. We will call her Kairee.
Kairee had changed her life from when I had known her a long time ago. She was very happy now, after losing weight. She now was happily married and owned her own mortgage company. She pulled me aside and said she wanted to give me a chance to get back on my feet. She offered me a job but my heart sank because I hated sales and had done this before. I was not good at things like this, having never been successful at any job that was purely for the money. I knew I would fail. I had no choice though and could see that she was doing well, was stable and wanted for nothing. So I accepted her offer.
My office was downstairs and she pointed me to an old wooden staircase deep in the fog. She sat at her table, the room turned dark green, and her associates surrounded her wearing their black suits and high end shoes. I did not receive a warm welcome, except for from Kairee. She hinted not to worry and I went down the stairs.
The steps were many, probably over 20, straight down into the darkness. The whole room was old, wooden, dusty and filled with furniture and broken crates and boxes. A few light bulbs hung from the ceiling as I stumbled across what I could see as a floor. I was lost and became swallowed up in the dungeon.
I became fearful that my cat Marilyn would never be found again, as I had seen her disappear in that fog and knew she had come down these stairs. As I frantically started searching for her and calling for her over and over, screaming as loud as I could, "here kitty kitty, Marilyn where are you?", dozens of other cats appeared from out of nowhere.
Each cat had a feature similar to sweet Marilyn, but she was not in sight. Each time I saw a cat, I would run up and try to catch it and see if it was her. It felt like an eternity and I became exhausted looking for her. I scrambled all over the place looking and looking and found myself running from the mechanical men with knives. Once again being attacked and then saved by a blue patch.
While looking for my cat, one of Kairee's associates appeared to me and threatened me, saying I was not going to be approved by the company insurance policy and would not stay employed for long. I was losing everything, my job, my cat, and fearing the loss of my life over and over.
Off in the distance was a fluffy old couch, maroon colored, made with cotton cloth.
I pulled away the musty cushions and found my kitty cat and pulled her safely up in my arms. Just as I did this my cell phone rang. It was my brother asking how I was doing. Thank God he called and woke me up from that awful nightmare.
I went back to sleep and did not wake up again until 5:30 pm. That was my day today. I have a CT scan tomorrow. See my oncologist and get chemo on Tuesday.
Can't get that nightmare out of my head............sigh.
Hope you all had a better day...ha!
Monday, December 31, 2012
Happy 2013 Wish For You
Our family has survived one of the most challenging years of our lives. Sweet mom on the upswing now after multiple hospitalizations, I am still on chemo, and other very endearing family members coping with new illnesses and lots of change. We have also experienced joy with a very bright cousin moving on to Johns Hopkins, kids changing to better schools and opportunities to receive visitors from close family from far away places.
The little joys, coffee with mom, a short drive with my sister catching up and sharing a laugh or two, seeing my nieces and nephew play together, laughing and being real. Hearing funny stories about aunts and uncles. Seeing beautiful cards in my email box from a dear friend in California. Seeing mom get surprise roses from a friend. Leaving the doctor office remembering the words, "things look better now". Getting a text from dad saying I love you. Getting to say I love you to my mom almost every day.
Waking up to see my beautiful kitty kat purring over my face, hungry for her first meal of the day, but patient and graceful as she waits (except for the one day she nubbed my head with her teeth, guess I slept too long). Marilyn gives me much needed laughter and love. I feel like a little kid when I get to play with her. She will chase a little ball. She will run in and out of this little kitty tunnel, and have me chase her. She will let me carry her around in little boxes. (Still cannot download the video of her and singing around the tree but it is on my facebook page),
The little joys in life are what keep us going day to day. My goal this year is to give more little joys than last year. Leave my spaces cleaner when I leave. Be even more polite and offer everyone a smile, even if I don't feel like it.
I am continuing chemo in January. I am extremely fatigued, but am compensating for that. I just work around it. I make the most out of my awake time, work, be with family, and my kitty. I work on my heartfelt causes to increase awareness of ovarian cancer and now have taken an interest in helping find peaceful ways to protect children in schools.
The tragic shooting at Sandy Hook Elementary School brought us to our knees. This can never happen again. God Bless the survivors of Sandy Hook.
January is a much dreaded time of year, cold and dark. It is the perfect time of year to clean out the clutter that takes us away from giving true love and joy. I need to find more time to attend Church services, with my fatigue, I never wake up in time. I have to do that, I dearly miss Mass. But God knows how much I love him as I pray morning and night.
My New Years wish for you is to experience and give more little joys to yourself and to those around you. By spreading little joys, and giving more smiles, who knows how that one little action could energize someone to do something they need to do........because they felt a tiny dose of love.
Happy New Year to each and all of you. I do love you all and pray that 2013 brings more joys, better health, more security and happiness for you and yours.
God Bless you and your family.
Happy New Year
Love,
Denise
Monday, December 24, 2012
My Christmas Wish
If this Christmas you had one chance to ask for a miracle, what would you say?
This year has been really challenging for our family. I cannot tell a lie. My sweet mom, our heroin of life, our rock has been sick most of the year. Long hospital stays, multiple heart attacks and serious complications from her diabetes. We never made our trip to Bainbridge Island. Today we were supposed to go out so she could do Christmas shopping for the first time, that was the plan. Instead she was once again very ill today and it broke my heart. She has not yet had a chance to enjoy the celebrations of this holiday season. I am praying on Christmas Day that she is freed from this pain and illness so that she can relish in the joy of seeing her grandchildren and daughter and son-in-law....and me too.
Many people in the family have been challenged with new illnesses, working more, surgeries and worries. I have been in chemo since March of 2012. Juggling chemo, side effects, fatigue, nausea, etc etc etc and working part time and fully participating in every way possible to help mom, in a way that works for her, has been rocky.
Recently I am receiving psychological counseling to manage what may be true to the form anxiety attacks. That sequence of abdominal pain followed by nausea followed by sweating and shortness of breath and panting, losing focus and just getting plain overheated all over is not actually a hot flash. So now I am learning how to cope with that problem in a new way. I never had these episodes before cancer.
The blessing is that we are here to experience all of this suffering. I know that sounds bad, but those sweet babies at Sandy Hook Elementary never had a chance to live long enough to experience such pain. They are little lights in heaven with God.
So now it's time to reflect on the blessings. The pain and suffering that wreaks havoc on all of us is a blessing for Jesus suffered on the Cross for us, as God loves us so much that he sacrificed his only son to forgive us of sin. We must forgive to find peace.
So back to the first question, if you could get one miracle, one chance to have anything in the world, what would your wish be for Christmas?
I know what mine is.................I want for each of us to embrace the true meaning of love and keep that feeling for all of humanity, all living creatures. Love one Another as God has and does Love You. Rid yourself of hatred and destructive thoughts. Leave nothing for the sickness to hold onto. Love your neighbor as you would love yourself and trust in the Lord.
I am so passionate about the future for our children to include loving environments and peace. I got a little sidetracked but felt compelled to publicly state an idea that could help schools be just a little safer, without the use of weapons and armed guards. This comes from a very deep core belief that children will be emotionally and spiritually scarred if they are constantly surrounded by people with weapons. It is wrong to do this to them.
In order to foster a world of peace, we must trust, we must love one another. It would be hard to create and nurture that trust and love while surrounded by guns. It does not set well with me.
I want our children to love one another! I want you to feel loved, and that is my wish for you, to feel loved. Know that God loves you, and I love you.
Merry Christmas to you and yours, and may all your Christmas wishes come true.
Love,
Denise
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https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl
Instead of guns, lets begin to bridge the gap from the horrors of yesterday to the peace of tomorrow. I am asking for people to join hands to create Rings of Hope, around their schools when the children return from holiday break. Parents, family, good citizens uniting together for the day to show the children WE keep them safe. No guns. No weapons. We can do this now. Keep watch and be their loving guardians while the other solutions are discovered.
We need to elevate schools and our children so that schools are a center of life learning, for not only math, science and language, but culture, arts, health, communications, sports, leadership and community building. This is the opportunity for growth.
Please go to Ring of Hope, Arms Across America and stand with and for the children at your local school, be their sentry for a day. This idea has incredible opportunities to grow beyond one day of strength. Please speak with other parents and see if they will join you.
All you need to do is just hold hands, be arm in arm, for the day that your child returns to school after the holiday break. When the children see how strong we are, and they see the love, they will feel safe. We don't need guns to help them feel safe.
Help to create a Ring of Hope around the school for that day.
https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl
Instead of guns, lets begin to bridge the gap from the horrors of yesterday to the peace of tomorrow. I am asking for people to join hands to create Rings of Hope, around their schools when the children return from holiday break. Parents, family, good citizens uniting together for the day to show the children WE keep them safe. No guns. No weapons. We can do this now. Keep watch and be their loving guardians while the other solutions are discovered.
We need to elevate schools and our children so that schools are a center of life learning, for not only math, science and language, but culture, arts, health, communications, sports, leadership and community building. This is the opportunity for growth.
Please go to Ring of Hope, Arms Across America and stand with and for the children at your local school, be their sentry for a day. This idea has incredible opportunities to grow beyond one day of strength. Please speak with other parents and see if they will join you.
All you need to do is just hold hands, be arm in arm, for the day that your child returns to school after the holiday break. When the children see how strong we are, and they see the love, they will feel safe. We don't need guns to help them feel safe.
Help to create a Ring of Hope around the school for that day.
https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl
https://twitter.com/RingOfHope
Saturday, December 15, 2012
In Memory Of 26 Lights Of Love
http://www.usatoday.com/story/news/nation/2012/12/15/victims-connecticut-school-shooting/1771765/
Forever we will remember these beautiful innocents:
Charlotte Bacon (2/22/06), 6 years old, female
Daniel Barden (9/25/05), 7 years old, male
Rachel Davino (7/17/83), Staff member, 29 years old, female
Olivia Engel (7/18/06), 6 years old, female
Josephine Gay (12/11/05), 7 years old, female
Ana M. Marquez-Greene (4/4/06), 6 years old, female
Dylan Hockley (3/8/06), 6 years old, male
Dawn Hochsprung (6/28/65), Principal, 47 years old, female
Madeleine F. Hsu (7/10/06), 6 years old, female
Catherine V. Hubbard (6/8/06), 6 years old, female
Chase Kowalski (10/31/05), 7 years old, male
Nancy Lanza, 52 years old, female (mother of shooter Adam Lanza)
Jesse Lewis (6/30/06), 6 years old, male
James Mattioli (03/22/06), 6 years old, male
Grace McDonnell (11/4/05), 7 years old, female
Anne Marie Murphy (7/25/60), Staff member, 52 years old, female
Emilie Parker (05/12/06), 6 years old, female
Jack Pinto (05/05/06), 6 years old, male
Noah Pozner (11/20/06), 6 years old, male
Caroline Previdi (9/07/06), 6 years old, female
Jessica Rekos (5/10/06), 6 years old, female
Avielle Richman (11/17/06) 6 years old, female
Lauren Rousseau (June 1982), Staff member, 30 years old, female
Mary Sherlach (2/11/56), Staff member, 56 years old, female
Victoria Soto (11/04/85), Staff member, 27 years old, female
Benjamin Wheeler (09/12/06), 6 years old, male
Allison N. Wyatt (07/03/06), 6 years old, female
Like many people today, I am shocked, dazed and deeply saddened by the killing of 26 innocent women and children at Sandy Hook Elementary School yesterday. As I write this I am not even certain that the event happened yesterday, time escapes me. Writing out a few thoughts helps to recalibrate this feeling of being lost, numb, tearful and worried. With that, trying to comprehend how it feels to be in Newtown, CT. Complete immersion in the devastation and grief. A sense of calm comes forth knowing that the people are reaching to God and to each other as they move through this painful time.
It brought back the crystal clear memories of Columbine High School, the radio announcement, the snowy cold day, and me pulling into a parking space in downtown Denver to sob. Looking at the guy in the car next to me, doing the same.
At Sandy Hook Elementary the majority of the victims were sweet little children, just babies. To try to make sense of this or understand reasoning behind this madness seems futile, but we will try.
As a person who thinks about death far more often than one should, the greatest fear about death is suffering through it. We will never know the extent to which those sweet little children and their heroins suffered. Too much to bear to think about.
Before this day, their beautiful little lives were immersed in simple joys like having a play date with a best friend, making a drawing in art class, baking cookies with mom and reading bedtime stories with dad. It's really difficult to grasp the overwhelming awareness of how in just a mere instance of time, this community was forced to their knees.
Breathe deeply for a moment .................
Our capacity to love is grand and in spite of this horror, more of our neighbors are good than bad. More will help than hurt. More will protect than abandon.
More love than hate.
God swept up these angels into His arms at the moment of their death and they are protected and cannot be harmed again. They will never fear again.
I found a proverb that sort of rounds out all the turmoil 29:26-27
"Do you want justice? Don't fawn on the judge, but ask the Lord for it! The good hate the badness of the wicked. The wicked hate the goodness of the good."
Give your angst, your pain, your fear, your grief to God. For God will take it and help you to be strong. The families of these innocents need all of our strength and prayers. They are weeping from a place that I cannot imagine.
Rest In Peace Dear Innocents of Sandy Hook Elementary School
May the Lord's Blessings Be With You
Wednesday, November 28, 2012
Brain Scans Reveal Chemo Brain is Real
This is groundbreaking news because so many of us undergoing chemotherapy experience unusual and unexpected problems because of the poison's effect on our brains. This validates that we are not crazy and that we are not overstating our problems. It is just ridiculously difficult to explain this phenomenon.
Thankfully I am not experiencing the same level of "dead head" that I had the first time I went through chemo. I used to say that chemo steals the soul.
This new research will help many patients, families, coworkers and caregivers better cope with the many unusual cognitive and behavioral changes that are not only associated with chemo brain, but with receiving a diagnosis of cancer.
So grateful for this research!
'Chemo Brain' a Real Thing
By Kristina Fiore, Staff Writer, MedPage Today
Published: November 28, 2012
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco
CHICAGO -- The phenomenon known as "chemo brain" appears to correlate with reductions in glucose metabolism in brain regions tied to cognition, researchers said here.
In a single-center study of breast cancer patients who had undergone chemotherapy, there were significant changes in metabolism in the superior medial frontal gyrus and the temporal operculum as measured on PET-CT (P=0.025 and P=0.036, respectively), Rachel Lagos, DO, of the University of West Virginia, and colleagues reported during a press briefing at the Radiological Society of North America meeting here.
"The good news is that we are seeing evidence on PET-CT that is diagnostic for this phenomenon," Lagos said during the briefing. "Having diagnostic criteria is going to be one of our first steps to providing relief to people receiving chemotherapy."
Chemotherapy has long been associated with cognitive decline, including loss of memory and concentration that can cause trouble with activities of daily living. Yet the exact etiology of chemo brain is difficult to determine, and some have questioned whether the phenomenon is indeed real.
So Lagos and colleagues took a retrospective look at 115 patients who had undergone chemotherapy for breast cancer at their facility. None had disease that had metastasized to the brain.
They used PET-CT to assess changes in brain function and calculated z-scores for changes in brain metabolism in certain regions, with patients serving as their own controls.
Overall, they found significant decreases in glucose metabolism in brain regions closely associated with symptoms of chemo brain:
- Superior medial frontal gyrus: associated with mental agility and decision making (P=0.025)
- Superior medial frontal gyrus, left to right difference: problem solving and sequencing (P=0.023)
- Temporal operculum: long term memory (P=0.036)
"This corresponds to anecdotal evidence we're hearing from patients about how their life is being affected by chemotherapy," Lagos said.
Although the researchers did not calculate an average value for the change in z-scores of glucose metabolism pre- and post-chemotherapy, Lagos said values ranged from a decline of 2.5 to 8 points.
She said the findings reinforce that chemo brain "is a disease. It is a side effect. It is real. You're not crazy."
The exact mechanisms are still unclear, but the effect could be mediated through a cytokine response or may have something to do with nerve demyelination.
Max Wintermark, MD, chief of neuroradiology for the University of Virginia in Charlottesville, who moderated the session during which the findings were presented, told MedPage Today the metabolism changes may also have something to do with the stress and anxiety of going through chemotherapy.
"It could have something to do with those changes, but more research is needed," Wintermark said, adding that the finding is reassuring for women who experience cognitive symptoms during chemotherapy.
"Instead of those symptoms being dismissed, we can see there is a substrate for them," he said. "Just to know they are not inventing those symptoms, I think that will help them go through this difficult experience."
Lagos added that acknowledging the fact that chemo brain exists is the first step toward helping patients cope with the disease, and that psychosocial therapies can be tailored to their needs, such as providing them with lists to get through their daily activities.
She added that it should be comforting for women to know that chemo brain tends to resolve once treatment is finished.
The researchers reported no conflicts of interest.
Primary source: Radiological Society of North America meeting
Source reference:
Lagos R, et al "Towards diagnostic imaging of ChemoBrain phenomenon" RSNA 2012; Abstract LL-MIS-TU2A.
Source reference:
Lagos R, et al "Towards diagnostic imaging of ChemoBrain phenomenon" RSNA 2012; Abstract LL-MIS-TU2A.
Monday, November 26, 2012
A Dog's Nose Knows Cancer
By
MICHELLE CASTILLO /
CBS NEWS/ November 21, 2012, 2:55 PM"Doctor dogs" being trained to sniff out ovarian cancer
Rescue dogs that were saved are now being trained to save other people's lives by sniffing out ovarian cancer.
Dina Zaphiris, a pet owner and dog trainer from West Hills, Calif., is working with researchers at the Pine Street Foundation to teach dogs how to detect ovarian cancer from a person's breath.
"These dogs would rather find the cancer sample than a steak," Zaphiris told CBS station KCBS in Los Angeles.
Zaphiris felt a personal connection to the project after her mother was diagnosed with breast cancer in 1990. Eventually, her mother died in 2010.
"Her struggle: She did not find it early," she explained.
Now, Zaphiris works four hours a day, four days a week training mixed-breed dogs how to use their noses to find cancer. First, healthy people and ovarian cancer patients are instructed to breath into sample jars that contain a piece of cloth. The samples are slotted into a specially made trough. Then, the dogs are allowed to sniff the samples. When they correctly detect cancer, they are given a reward.
/ KCBS
One of the dogs, Schatzi, was about to be put down before she was enrolled in the study. Now, Zaphiris said the dog is one of the few who has never missed a cancer sample.
This new research is the first and only federally-funded study on using exhaled breath as a diagnostic tool for ovarian cancer, KCBS reported.
However, this isn't the first study that used dogs to detect cancer. In 2005, 60 Minutes looked at a study in England that was training dogs to sniff out bladder cancer using urine samples. On average, the dogs were 41 percent accurate, which is statistically significant according to Dr. Carolyn Willis, a research dermatologist who worked on the study.
Researchers had become discouraged when the dogs seemed to get held up on one "healthy" sample time and time again. They decided to double-check the diagnosis. It turned out that that person had kidney and bladder cancer that the lab had missed.
Other studies to look at dogs' cancer-sniffing abilities include one at the Schillerhoehe Hospital in Germany, which used dogs to smell out lung cancer using a person's breath. The dogs were able to accurately detect lung cancer in 71 percent of the cases and tell if a person was healthy in 93 percent of cases.
Another study in Japan showed that dogs could smell colorectal cancer in a sample of fecal matter 98 percent of the time.
- Can dogs sniff out cancer?
- Sniff out lung cancer? Study says dogs can do it
- Colorectal cancer no match for tumor-sniffing dog?
Zaphiris worked on a previous cancer detection project using in 2003. She claimed her dogs were 98 to 99 percent.
Michael McCulloch, research partner on the current ovarian cancer study and director of the Pine Street Foundation, said to KCBS that breath has been used to detect diseases for centuries. Ideally, he hopes that dog detection can become a non-invasive way to diagnose cancer earlier than screenings or blood tests might.
"Who will win out in the end: Is the dog more accurate or is the laboratory more accurate? Is it the lab or the Lab?" he pondered.
© 2012 CBS Interactive Inc. All Rights Reserved.
This is a fascinating study. I fully entrust in the power of the "nose". I recall prior to my diagnosis that I knew I had a different breath and body scent.
I remember asking over and over to my doctor in California if my breath was "bad". A polite "no, of course not" combined with a repressed smile always followed.
I hope that this study finds roots in the cancer community
because it could save thousands of lives.
Very exciting study.
Love,
Denise
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