Thursday, January 29, 2009

Jan 27, from Chemo recliner at CINJ to hospital bed at RWJUH

The past few days have been busy and interesting to say the least.
Jan 27~
Thursday I arrived at 7:45 at CINJ for chemo number 2. They accessed my port and I went to see Doctor Gibbon. I was happy that my CA-125 was down to 18, white, red and platelets were good and the physical exam was good. Back I went to the treatment area . I started to use Emend to prevent the nausea I had last time and also used the other premeds. I got through my titrated taxol( 3 + hours) with no problems. Did the flush in between and started the carboplatin.Roughly halfway through the half hour dosage ~ 12 minutes, I felt light headed and flushed. ( This was my 11th carboplatin infusion and up to that point had no side effects.)I looked up out of chair number 1 ( which is right across from the nurses station) and said "Carla things are not right" .She ran over and immediately stopped the drip purged the line while the other nurses called the pharmacists and my doctor and the nurse practitioner. They gave me various IV drugs but I was still short of breath , had chest pressure and sharp pain in my chest by my sternum. They did an EKG that was abnormal so Dr Rodrgiuez took the results across the street to RWJUH and came back with the 2 cardiologists who thought it best to admit me.

So an ambulance was called around 3:15 and literally drove me across the street. I stayed in the emergency room until a bed on 4 north 6 opened up around 9:30 pm. Nick visited a short time and then alycia and Kevin stayed until I was in a room. Lucky for me that brought some food for me to eat. (Thanks guys.) While in the emergency room it was decided that I should have an cardiac catheteritization on Wednesday. They discussed the stress that the carbo played on my heart and the need to check if I had any blockages and also to check enzyme levels and how my muscle was functioning so I stayed overnight.

Jan 28
I slept good through the night and at 10:30 they moved me to the catheterization department. Dr Burns ran the test and found no blockages -HURRAH- with no need to isert any stents. The heart muscle looked good to him too. So after waiting a half hour with pressure on the femoral artery they moved me back to the 4th floor. I had a heavy pack on the incision and waited 4 hours before I could get out of bed. It was not a difficult procedure. I guess I was more worred about what chemos that would be next on the agenda. Since I was still had a rash from the carbo on my back and chest they decided to leave me overnight .

Jan 29
I was examined by the cardiac nurse practicioner and my gyn onc this morning .They felt I was strong enough to go home . It helped that I wasn't nauseaus ( thank goodness for that.) There was a small discusion of cis-platin over a long infusion time ( up to 24 hours) or possibly doxil for my next round. I have time over the next two weeks to discuss the next steps with my doctors.

I am so pleased with the speed and concern with which my doctors Rodriguez, Nieves, Gibbon, and the treatment nurses Carla etc at CINJ reacted to my incident. Thanks to the RWJ Paramedics Dan and Jessica for the smooth - short ride to the hospital. The quick response of Drs DeMoss, Su and Burns to check out my heart. and lastly I also would like to thank the nurses on 4 North at Robert wood University Hospital for all their help and concern.

Every Day is a Blessing and I have most certainly been blessed these past few days.

LIVESTRONG
Dee

I will probably not post over the next few days- they are my very tired days. But I just wanted every one know that I was home and doing well.

Wednesday, January 21, 2009

Cecile and Ken Youner Fund for Cancer Research

In May of 2007, I met Dr. Ken Youner. He, a kidney cancer sufferer and I were chosen as LiveStrong Day 2007 delegates from New Jersey. We hit it off fabulously talking about our spouses (His wife Cecile was a breast cancer survivor) and children as well as our commitments to the LAF and cancer advocacy. We had a successful day on Capital Hill visiting Senators Lautenberg's and Menendez's representatives as well as Ken's representative Congressman Rothman. This July, I ran in to Ken again at the LiveStrong Summit in Ohio where I learned he was the Livestrong Army Northern NJ leader.

In December, I learned that Cecile had passed away.

Here is a portion of the e-mail that Ken wrote me:

Before Cecile died she told me that I should continue fighting for both of us. I will continue doing work for these organizations(LAF,etc). However in order to make sure the funds are directed to where they will make the most impact I have formed the Cecile and Ken Youner Fund for Cancer Research. I have spent the last 4 years evaluating cancer research to see where funding should go. To streamline giving and maximize the use of charitable funds, the Fund is managed by FJC-A Foundation of Philanthropic Funds (www.fjc.org). All funds will go directly to fund innovative cancer research.

This is an exciting time in cancer research. Scientists are starting to understand the molecular genetics of cancer. This research will continue to reveal answers to help treat and prevent the spectrum of diseases that cancer represents. Cancer is the leading cause of death in people below the age of 85. It will affect the lives of 2 of 3 men and 1 of 2 women in the US. As Lance Armstrong notes-fighting cancer is everyone’s obligation.

Take definitive action now. You can send a check directly to FJC at 520 Eighth Ave. NY, NY 10018. Note CKYFCR in the memo to make sure it goes to the correct place. You can send the check to me (277 Maple St Englewood, NJ 0731) or you can donate on the web at www.fjc.org. All donations of more than $250 will automatically receive a letter for the IRS. Any donation will receive a letter if requested.

Please consider donating to the The Cecile and Ken Youner Fund for Cancer Research.

Livestrong ,
Dee
Every Day is a Blessing .

N.E.D. - the Band

Here is some more info about some gyn-oncs who also happen to be musicians. The Gynecological Cancer Foundation is helping raise funds so the band can produce a CD.

This came in an e-mail from GCF.

Rhythm Heals-N.E.D. (no evidence of disease) GCF/SGO Physicians Rock!
NED Band

In March 2008, six gynecologic oncologists got together and created a band, N.E.D. (no evidence of disease). The band's purpose is to create a musical medium for healing is to enhance knowledge about gynecologic cancers and bring hope through rhythm for women undergoing treatment.

The name of the band itself-no evidence of disease-represents the hope that every gynecologic oncologist has for every patient. That at the end of treatment the disease will be gone.

The members of the band are all practicing gynecologic oncologists who spend many hours in the care of women each week-in the operating room, in the treatment room and even at the research bench striving for better ways to treat cancers unique to women.

GCF is accepting donations and soliciting funds to support the production of the band's first CD. Proceeds from the sale of the CD and live performances will be donated to the Gynecologic Cancer Foundation (GCF) whose mission is to educate the public about gynecologic cancers and support promising research.

You can support these SGO/GCF members by donating now to a designated GCF fund by going to www.wcn.org/about/donate.html.

Congratulations to Drs. John Boggess, Joanie Hope, Nimesh Nagarsheth, William Robinson, John Soper and William Winter. You rock!

What a great way to raise awareness.

Livestrong
Dee

Every Day is a Blessing!

Tuesday, January 20, 2009

"We have chosen Hope over Fear"


That is just one small line from President Barack Obama's inauguration speech.


Those diagnosed with cancer choose Hope over fear throughout their journey.
They choose Hope over fear as they prepare for surgery.
They choose Hope over fear as they sit in the recliner waiting for their chemotherapy infusion to begin.
They choose Hope over fear as they lay down in preparation for their CT scans.
They choose Hope over fear as they begin radiation treatment.
They choose Hope over fear as they play games with their children.
They choose Hope over fear as they wait in their oncologists office to hear the results of their tests.
They choose Hope over fear as they have yet one more blood test.

I choose Hope over fear.
I choose Hope over fear as I get ready to shave my head. My hair falling out in clumps is just not the way I want it to be. Better to just cut it off. I've got lots of hats and scarves and will dig out that old wig. I just wish it was not winter time. Brrrrrrrr.

I have hope that it will come back in curly.


Livestrong
Dee
Every Day is a Blessing

Monday, January 19, 2009

Livestrong Global Campaign Launched

Today I received this e-mail:

The Lance Armstrong Foundation (LAF) has worked hard to make cancer a national priority in the United States. While we still have many challenges to address in the cancer fight, we've made significant progress domestically.

As a result of the work of the LAF and the cancer community throughout the 2008 campaign, President-elect Barack Obama committed to double funding for cancer research and pledged to renew the war against cancer.We'll continue to fight cancer in the U.S., but cancer is a leading cause of death around the world. Our mission hasn't changed; it's just gotten bigger.

The LAF will join with partners, organizations and world leaders to help end the stigma of cancer, build an international grassroots movement and secure meaningful commitments from world leaders to fight cancer in their countries.

I'm ready to get involved.

I'd like to follow along.

Combined with Lance Armstrong's return to professional cycling, the LAF hopes to raise awareness and secure commitments around the world as he races in international events. Each country's commitment will focus on specific issues and concerns in their community, and will be aligned with one of the 2020 targets outlined in the World Cancer Declaration.

The LIVESTRONG Global Cancer Campaign will kick off this week in Australia as Lance races in the Tour Down Under from January 18–25. Australia is an important country in the fight against cancer. By 2010 cancer will be the #1 killer globally. In Australia, cancer is already the leading cause of death. We have no time to waste. We hope you'll join us in making cancer a global priority.

Are you ready?

I'm ready to get involved.
Join us and make a commitment to fight cancer around the world.

I'd like to follow along.
Keep up with the LIVESTRONG Global Cancer Campaign, the Lance Armstrong Foundation and news about Lance as he races and raises cancer awareness around the world.

LIVESTRONG,

Doug Ulman
President and CEO, Lance Armstrong Foundation


Now for some good News on the homefront , my niece's mother-in-law's surgery went well this morning.


LiveStrong

Dee

Every Day is a Blessing!

Friday, January 16, 2009

NJ Assembly Bill 3382 Out of Committee

On October 27, 2008 Assemblywomen Mary Pat Angelini introduced a bill ( A-3382) to permanently designate February as "Ovarian Cancer Awareness Month in NJ" . The bill was approved yesterday by the state Health and Senior Services Committee. Now it can go for a vote in the Assembly.

From the bill:
"to promote awareness among the general public and the health care community of the symptoms of ovarian cancer , the importance of early detection and the risk factors associated with developing ovarian cancer"

Here is a link to a press release on PolitickerNJ about the bill.

Now I am not sure why February was chosen since September is National Ovarian Cancer Awareness month but it sure can't hurt having two months designated to help educate and make people and physician aware of ovarian Cancer.

What we need to make this Awareness Month successful is the funds to educate, print materials , have conferences. There are two other bills also introduced in the Assembly( A-2662) and Senate (S 1651) to establish a program for OC awareness in the Department of Health and Senior Services and to fund ($75,000) the program. Those are essential to getting the word out and I hope they move through committee quickly. These programs will go hand in hand with our state's Cancer Control Plan.( See the link on the left for the document.)

LIVESTRONG

Dee
Every Day is a Blessing!

Thursday, January 15, 2009

What Progress Would Have Been Made If People Invested 50 Billion $ In Cancer Research Instead of Bernie Madoff

Ok that title pretty much says it all.

I write this entry thinking about my three close friends in the past 3 weeks who have received a cancer diagnosis. One diagnosed with breast cancer who has a lumpectomy scheduled in February, one diagnosed with uterine cancer ( thank goodness she caught it early) whose surgery is scheduled for Monday and one diagnosed with adenocarcinoma of the pancreas who is still plotting his course. I hate this disease. I pray daily for my friends.

LIVESTRONG
Dee

Every Day is Indeed a Blessing!

Tuesday, January 13, 2009

Allow Me to Digress


Yesterday I got some energy back. I took a trip out to the store to pick up some things and was able to get the Jan issue of Southern Living Magazine. I know I try to keep most of my entries OC related so here is where I digress.

I have started to feel down about not having my children close by. Terry and Andy are in OK with little silly Silvio pup and Matt is leaving today to go back to Blacksburg. And I was feeling physically spent and ached from my first treatment. After watching some TV last night I started reading the magazine. Half way through there was an article. " Wide Open In West Texas" about western TX 200 miles or so east of El Paso. It brought back so many memories of our June trip to bring Terry and Andy back to El Paso. We passed through miles of dessert between Pecos and Van Horn on Route 10 that was just incredibly beautiful - desolate but beautiful. We had not actually passed through Marathon on which the article was written. But it was great to read what the residents said about living with so much space. " Out here you can just Breathe" and " In the openness you suddenly feel creative". And then it hit me. Why don't I think of these chemo rough patches as a time to breathe. Don't stress just Breathe and just see what happens.

Who would think that a magazine article would have such a profound affect. I can Breathe.

LIVESTRONG

Dee
Every is a Blessing!

PS the image above is one I took on Route 10 by Pecos, Tx

Monday, January 12, 2009

Yoga for Cancer Survivors

Starseed Yoga - Monclair is offering a free class for Cancer survivors. Dr Susan Herman will lead the class on Thursdays at 2pm. For more information contact:

215 Glenridge Ave.
Montclair, NJ 07042
973.783.1036

Montclair@StarseedYoga.com

LIVESTRONG
Dee
Every Day is a Blessing

Sunday, January 11, 2009

Slowly emerging

Hopefully this entry won't be totally incoherent. I have had some rough days since Wed. Should remember that one does not extend ones time between nausea meds otherwise it will come back to get you. Thanks for the nurse help line at CINJ who came through with 2 other drugs that did the trick but made me sleepier. Oh well small price to pay.

Today I am feeling ok in that area but still very fatigued. I do stuff for an hour and than back to sleep I go. Tomorrow should be better since it will almost be a week since my chemo.

Once I get this routine down pat I'll be prepared for the next cycle. Now lets see if I can watch a quarter of the football game and not dose off.

LiveStrong
Dee
Every Day is a Blessing.

Tuesday, January 6, 2009

One down Five to go

My first chemo treatment at CINJ went very smoothly. I started pre-meds at 9:30am , did a slow titration of Taxol ( so I wouldn't get that dreaded reaction) and finished up with the Carboplatin. I was done at 2:00 and was home by 2:30. My nurse Vicki was great and short visits by my doctor, the two nurse practicioners in the group and the social worker who facilitates my support group at CINJ, made the time go quickly. Except for the headache I woke up this morning ( I think related to the incoming storm) I felt good otherwise. The three tylenols my doctor ordered help to take the edge off of the headache. The good news is that my CA-125 is already down to 39 so I hope it will come in the normal range and down to single digits by the 3rd treatment.

I may not be posting for the next few days. If I follow true to form from my first treatmens in 2005 I will be sleeping most of the time. But one never knows this time could be different.


By the way did you see the great news that a team of scientists from Princeton collaborated with a group of research doctors at CINJ to isolated a breast cancer gene present in patients whose cancer is most likely to spread. Click here for the press release from CINJ.
LIVESTRONG

Dee
Every Day is a Blessing!

Sunday, January 4, 2009

CDC's Inside Knowledge: Get the Facts About Gynecologic Cancer

CDC, in collaboration with the Department of Health and Human Services' Office on Women's Health, established the Inside Knowledge: Get the Facts About Gynecologic Cancer campaign to raise awareness of the five main types of gynecologic cancer: cervical, ovarian, uterine, vaginal, and vulvar.This national campaign is supported by the Gynecologic Cancer Education and Awareness Act of 2005, or Johanna's Law, which was unanimously passed by the U.S. House and Senate (109th Congress) in December of 2006, and signed into law by President George W. Bush on January 12, 2007. You can find lots of information and statistics on the linked pages. As an advocate for Johanna's Law I am pleased to see such a visible outcome and hope that many women and their doctors will make use of fact sheets, etc .

Check out the very informative site here: http://www.cdc.gov/cancer/knowledge/

Livestrong

Dee
Every Day is a Blessing!

Friday, January 2, 2009

Wired Magazine's- Why Early Detection is the Best Way to Beat Cancer

Why Early Detection is the Best Way to Beat Cancer
Although it is a long article it raises a number if interesting points about research into the early detection of cancers , including ovarian cancer. The article highlights Don Listwin, an engineer, ( formerly of Cisco) and his Canary Foundation .

It makes me feel good that there is more attention being giving to early detection tests for cancers.

LiveStrong

Dee
Every Day is a Blessing

Thursday, January 1, 2009

Happy New Year

I wish all my family and friends a very Happy, Healthy and Prosperous New Year!

LiveStrong
Dee

Every Day is a Blessing