Proof

I suffer from chemo brain.

Chemo brain has been very difficult at times for me. It has brought me to tears. Sometimes it is knowing there is something, like a specific word,  you want to say but your are unable to find that particular word. It is like writing out a recipe and not being able to list the ingredients. You know you need to add flour but the word is not there. So frustrating . I can usually find words to describe what the term or thing is. For flour I would use white fluffy wheat stuff.  But the word escapes me.

Sometimes when I am in a hurry I will say or  type a sentence that includes a word that makes no sense. Just the other day I texted my niece about Christmas but ended up putting down the word birthday. Weird huh. I didn't catch it. She did. Good thing she understands.

I can be in a conversation and my husband will ask me if I meant to use a word.  Many times that is not at all what I wanted to say. At other times my husband or children will graciously finish or find the word for me. Thank goodness. I write notes to myself all the time and will check and double check and triple check what I write here or in e-mails I send out because sometimes the letters are all there but they sure aren't in the correct order. I mix up numbers too. I taught math and computer science before chemotherapy and never made the errors I make now.

I was very happy yesterday to watch a video and read about research on chemo brain at the University of West Virginia that included before, during and after PET-CTs of 115  breast cancer patients brains. The study found that there was significant metabolic changes in the superior medial frontal gyrus and the temporal operculum of the brain. The superior medial frontal gyrus is associated with mental agility, problem solving, sequencing  and decision making and the temporal operculum is long term memory.

The researchers are not sure of the mechanics of the metabolic changes but it could be a cytokine response or nerve demyelination.Now all we need are researchers to discover how to reduce this metabolic change for those undergoing chemotherapy.

Sources :
Radiological Society of North America meeting Source reference:
Lagos R, et al "Towards diagnostic imaging of ChemoBrain phenomenon" RSNA 2012; Abstract LL-MIS-TU2A.

Medpage 'Chemo Brain' a Real Thing

Video MSNBC


Dee
Every Day is a Blessing!

I Am Thankful...

...to be alive!
...for my family and friends.
...for the doctors, nurses and staff of CINJ.


Dee
Every Day is a Blessing.

LIvES study ‐ GOG 0225

Attention all ovarian cancer survivors.
Here is a clinical trial that I recommend you participate in. It is through clinical trials that we learn more about our disease, ways to possibly prevent it ,  reduce our risk for it or treat it.

GOG 0225

Lifestyle for oVarian Cancer Enhanced Survival also called the LIvES Study is supported by the National Cancer Institute and the Gynecologic Oncology Group and is a multi-center study. This phase III trial will recruit 1070 ovarian cancer survivors . The primary objective is:
" To determine if patients who are disease-free after successfully completing primary and potential consolidation/maintenance therapy for stage II, III, or IV ovarian epithelial, fallopian tube, or primary peritoneal cancer and who are randomized to a healthy lifestyle intervention, will have significantly increased progression-free survival when compared with similar patients who are randomized to usual care."The study will also assess nutrients in the participants blood.

The study is open to:
Ovarian , fallopian and primary peritoneal cancer survivors stages II-IV
Women who have completed treatment within the last 6 weeks to 4 months for initial diagnosis of the disease
Women with no evidence of persistent or recurrent disease
Women with no history of another chronic illness
Women willing to fill out questionnaires and be contacted to answer questions by phone

You will:
Be assigned to either the control or intervention group
Be asked to modify your diet and physical activity if assigned to the intervention group
Be asked to fill out a daily Lifestyle Journal if assigned to the intervention group
Participate for 24 months
Fill out a questionnaire 4 times, provide blood 4 times and wear a pedometer
Be available for telephone coaching 22- 33 times over the 2 year time period

Click here for complete information on the NCI site.

At the ASCO annual meeting I attended this year I heard a talk about a similar study for breast cancer patients and am happy to see a study being run for ovarian cancer. If I qualified (I don't because I had a recurrence and out of treatment for too long) I would definitely like to participate.

Please check the site and see if you are eligible.



Dee
Every Day is a Blessing!

Getting Around to Sharing Good News

Yesterday, NJ had a Nor'easter. They named this storm Athena. Athena is the the goddess of war and wisdom. She dropped about 7 inches in my town and 15 miles east of  me they had 13 inches. So I think she should be the goddess of Nor'easters too. Between Sandy and Athena these past eleven days sure have been interesting.

Interesting on the ovarian cancer front for me too. Sandy and Athena distracted me so much that I forgot to post  some good news.

The results of my CT came back the Thursday before the hurricane . There was no evidence of disease. Hurray! I am now 4 years out from my recurrence. Even though my CA125 was 17.6 , higher than it was when I recurred, I did not  have active disease. Boy that CA-125 bouncing around sure does make me anxious.

The Friday before the hurricane, I  had an appointment with a gastoenterologist/surgeon to try to figure out what was causing this uncomfortable feeling I was having in my abdomen. My internal organs have been moved around a lot twice and I know there is scar tissue but both my gyn-onc and I felt we should check it out further. After an exam the doctor said everything felt normal and recommended I increase my fiber intake. No more Rice Krispies or tea and toast in the morning for me I've started eating high fiber cereal. Those Fiber One cereals and All Bran are not too bad when you add fruit. I've even added the All Bran to yogurt for a snack.

The doctor also told me to loose weight. I gained over twenty pounds since my recurrence.  So I will need to get to work on that by walking a bit more and eating less and possibly signing up for Weight Watchers again. Lastly the doctor recommended a colonoscopy. It has been 5 years since my last one so I will have a colonoscopy in January. You know even cancer survivors need to do those routine tests too .

Last piece of good news is the response I got after responding to a tweet calling for bloggers for a redesigned Society of Gynecologic Oncologist website. I'm honored and thrilled to have been accepted to post a few times a month. I'll let you know when my first post appears.

Dee
Every Day is a Blessing. Blessed by all the repairmen, emergency workers from NJ and states beyond who are helping to restore power, cable, etc to the state.

A New Normal For My State

This has been one heck of a week thanks to Sandy. Since I was five years old I have spent time each summer at the Jersey shore, Cape May, Wildwood, Atlantic City, Long Beach Island ( lots of celebrations and Memorial Day weekends at my cousin’s home) , Pine Beach ( my family owned a home there for a few years in the ’70’s), Ocean Beach (my brother -in-law and friends have homes there) , Point Pleasant, Seaside, Asbury Park, Belmar ( my in-laws had an apartment there on 9th Avenue and my kids grew up going to the beach there), Avon, Bradley Beach and Long Branch.  Seeing the devastation and loss of landmark parts of my state  caused by Sandy is very upsetting. I have  friends and relatives still without power almost 7 days later and there are gasoline lines in many areas of the state. There is also significant damage in NYC, Staten Island and Long Island and most public transportation services are running on modified schedules or are closed. The Holland tunnel is closed as is the Path train.

But there is also hope. It may take months and years but we will pull together and will rebuild. 

Yesterday, I was talking to my friend, N.   She is still without power / internet/ cable in Edison and was worried about her home in Lavallette which is sandwiched between the Atlantic Ocean and Barnegat Bay. I looked up her address on Google Crisis Map and was able to tell her that her home was still standing and the sand from the beach had stopped about four houses away from her. She was relieved. Of course we don’t know from the overhead shot if there is flood damage inside the house or if had been shifted off its foundation. But she said to me we will all find a new normal at the shore. 

A new normal is just what a person diagnosed with cancer would say. They need to find a new normal after facing a cancer diagnosis and finishing treatment for their disease. Most survivors don't return to the way it was. 

The people of my state will need to do the same thing. Find a new normal at the Jersey shore. 

Now I'm going to gather up some supplies to donate to those who lost their homes in this storm. I hope my readers will also find some way to help - the Red Cross, Salvation Army  , Tunnel to Towers Foundation, Hurricane Sandy New Jersey Relief Fund or another organization of your choice. Thank you from the bottom of my heart. 

Dee

Every Day is a Blessing!

Hurricane Sandy's Impact on NJ's Cancer Patients

Note: My home has made it through Hurricane Sandy with only minor damage to the roof. We are lucky to have power, internet & cable and our water is drinkable. Most of my relatives who live in various parts of the state of NJ are without power and many without water.  I have relatives and friends with homes on LBI, in Seaside Park and Ocean Beach III and Long Branch. Some know their homes are still standing while others have no idea.  We try to check out aerial photos for shots of their location since they are unable to get to those locations. I have another friend with a home in Monmouth Beach who had water up to their second floor and the home is now uninhabitable. But every single one of them is alive and safe. Thank God. 

Sandy was a huge storm affected almost 1000 miles of the northeast. But Sandy's impact on the lives of cancer patients is far reaching too. 

My cancer center, The Cancer Institute of New Jersey(CINJ)  is located in New Brunswick, NJ four blocks from the Raritan River. Sandy caused the Raritan River to flood its banks. The city was closed. Even Rutger's University located there is closed. I can count on one hand the number of times Rutgers has closed in its 200+ year history. There is a boil water advisory in affect and only essential and hospital personnel were allowed into the city. Power is out and public transportation is closed down.

Last night on facebook I read this post by CINJ. 
"Due to the hurricane, The Cancer Institute of New Jersey will be closed until Monday November 5th. Please share this as we are unable to distribute notification through email and on our website. Patients will be contacted directly. "

Robert Wood Johnson University Hospital RWJUH( located across the street from CINJ and its affiliate hospital) posted this:
"Important Announcement for all UMDNJ staff and patients:
UMDNJ has announced that they are cancelling all outpatient services for October 31, November 1 and November 2.
Patients and staff of UMDNJ should continue to monitor University communications outlets for updates.
 " 

The radiology group , University Radiology Group where I have my scans done posted this:

"Because of storm-related power outages, our offices will be closed Wednesday morning, October 31st until noon. We will be closely monitoring the outage situation during the morning hours. If power is restored to any of our facilities, we will re-open that office Wednesday afternoon. Status updates will be posted to this web site page, Facebook and Twitter when possible. Our staff will also be calling you to reschedule/confirm your appointment. " 

Those are pretty dramatic effects of the storm. 

I have or should I say had,  an appointment  for a port flush for tomorrow at 11:30 am. I get one every 6-8 weeks so I have a window in which to get it done. I am not too worried.

But I am thinking about my friends who are in treatment for recurrences. I think of all the cancer patients adults and children in treatment  in the region who are missing a dose of chemo or radiation or are unable to get a blood test. Maybe their facility is closed or  they can't get to treatment because roads are closed.  When Katrina hit New Orleans in 2005 I had just started my chemotherapy. I remember thinking how terrible it would be to miss a chemotherapy treatment.After all I needed to kill this cancer. And here is the same situation happening in my home state. On Sunday morning I had packed some things in case we needed to leave our home. The first thing I took out was my treatment binder - with surgical and CT reports and drug information. 

One ovarian cancer survivor I know had an appointment yesterday for a CT scan to see if she was back in remission and done with chemotherapy. She now has to wait. I feel that waiting and not knowing what is going on is one of the hardest things to deal with when diagnosed with cancer. 

This storm was unprecedented. I know the hospitals and cancer centers are doing all they can for their patients under the conditions they have experienced. 

 Back in 2006 I missed two treatments due to low platelets. At first I was upset but I rested, watched TV, painted and was ready to go the next week. So if you are reading this page and are missing a treatment, you may not be able to watch TV if your power is out I just know you will be ok. 

Dee

Every Day is a Blessing! 

 

Sandy

Sandy is currently about 250 miles off the coast of New Jersey. Meteorologists expect landfall in Atlantic City less than 100 miles from where I live in Mercer County.

My husband and I are prepared as best we can. We had a run at this preparedness last year during Hurricane Irene. We took in the patio furniture, bought water and food, have batteries and matches and a battery powered radio. Our cell phones are charged.We've gathered up important papers and are ready to take ourselves to the 2nd floor if the retention pond behind our home floods. I am taking pictures and will post after the storm.

The wind is kicking up and we are having some heavy downpours. Right now the power is still on but I am guessing that won't be the case later tonight.

Praying that my family and friends stay safe. Will update when I am able.

Dee
Every Day is a Blessing!