Gifts for Survivors

Seems like my mind is still on the Holidays so I'm going to continue on the topic.

First- hop on over to the HuffPost Healthy Living post titled Lori Hope: The Best and Worst Holiday Gifts for People with Cancer. Lori is a cancer survivor, and author of Help Me Live: 20 Things People with Cancer Want You To Know. She has put together two good lists. Personally, I wouldn't be adverse to a subscription to a current events magazine. When I was in treatment I had a hard time concentrating on an entire book. I ended up rereading too many pages in the infusion room, so instead I brought magazines and then shared them with other patients. Plus, getting a full year subscription would make me feel good that you thought I would last the year. Of course something like People Magazine might also make me laugh a bit.

Dee's Worst Gift List ( in addition to Lori's)

1. Fragrant candles or reed diffusers- check with the survivor's caregiver before purchasing. When I was in treatment some fragrances would make me nauseous. Really not the effect you want your gift to have.

Dee's Best Gift List ( in addition to Lori's)

1. I-Pod or I-Tunes gift card ~ I loved listening to my I-Pod shuffle while in treatment. It helped to drown out all those beeps and bells from the instruments. The I-Pod Shuffles are relatively inexpensive.

2. Warm V-necked shirts ~ I have a port-a-cath so v-neck shirts help the nurses easily gain access to my port.

3. Pretty Shawl ~ I was always chilly in the treatment room and if you have an IV in your arm, wearing a sweater is difficult. My church offers Prayer Shawls to patients. I received one when I was in treatment and still use it.

4. An Experience Gift Card- I would rather experience something than have another gift under the tree. Experiences could range from dinner out with friends, a trip to a museum, a day at the spa, a day at the outlet mall ( who doesn't like shopping) , a day at the beach/lake ( I know winter is on its way but just sitting in the sun and watching the ocean is very calming to me.)

If you have any additional suggestions leave me a comment.

Happy Gift Giving!

Dee

Every Day is a Blessing!

Advice from my Christmas Past

Over the past few days we have been slowly decorating for Christmas. It is one of my favorite times of the year.

With the weather here in the northeast in the mid-high 60's, and with the help of my husband and son , we decorated the outside of our home. Then we moved inside. Day 2 , decorate the mantle and place the Advent Wreath on the dining room table with its pink and purple candles; Day 3, set up the tree; Day 4, decorate the tree; Day 5, put up the Nativity and add a touch of Christmas to the kitchen.

Before my cancer diagnosis with the help of my entire family I would begin decorating the morning of Black Friday and by dinner with Christmas Carols playing the entire house inside and out was decked out for the holidays.

It doesn't work that way any more. And it most certainly didn't work that way in December 2005 while in chemotherapy and five months after I was first diagnosed, or in December of 2008, one month after my recurrence and surgery on my spleen and liver.

Having experienced two Christmases in treatment I offer this advice:

1. Look at everything you have to do, prioritize and cut back. Instead of baking 5 different cookies, just bake two. Instead of midnight Mass/ Service maybe attend the earlier evening service. Can't make it to church ? Contact your pastor /minister/ deacon and ask them to visit you. Can't imagine lugging the Christmas tree and decorations from the attic? A simple dwarf spruce tree from a local store might be just the thing to bring the Christmas spirit into your home. And in the spring time you can always plant it outside. To tired to shop? Buy online. Don't have a computer? Check those Sunday newspaper adds and call the stores to order your presents. (I know you are reading this and saying I need to do everything. I have said the same thing. I know how you feel. I've cried a few times over not being able to physically do things.)

2. Ask for help. I never wanted to ask for help. I'm stubborn like that. I thought , I was the mom I was suppose to make the cookies, buy the gifts, plan the dinner. But I came to realize that family and friends really want to help out. So I learned to let them. It was ok to let Theresa and Matt make the cookies and for Nick to buy the presents. And it was ok to go to a friend's house for Christmas Eve and just enjoy the night. And it was ok that every decoration was not on display. Ask for help to wrap presents and make out Christmas cards.

3. Get your rest! I learned to nap - at other people's houses. I would just ask the hostess if it was ok if I went in to another room to rest. A half-hour later I was good to go for a few more hours.

4. Eat right! Be sure that you eat those 3 meals a day or more if you need to. Sometimes when you are visiting others the meal might be scheduled later than you are used to. Be sure to eat some crackers, fruit, a handful of nuts or have a glass of juice. Those things should tide you over until the meal begins. Remember if your white count is low to follow the guidance the doctor has given you about what to avoid.

You can be in treatment and have a very Merry Christmas too. This advice works for those celebrating Hanukkah and Kwanzaa too. Enjoy!

Dee

Every Day is a Blessing!Blessed to be here for another Christmas season.

Immunization Presentation - Nov 30th

Capital Health presents

IMMUNIZATION UPDATE

Wednesday, November 30, 2011

6:30 – 8:00 p.m.

Capital Health in Hamilton

1445 Whitehorse-Mercerville Rd., Hamilton

Join Doug St. John, Pharm.D. and learn more about current vaccine information. The program will discuss the role vaccines play in healthcare and also explore the controversies surrounding them.

Preregistration Required.

For more information and/or to register for this program, call 609-394-4153. You may also register online at www.events.capitalhealth.org.

Nursing contact hours will be given at this program.

Capital Health is an approved provider of continuing nursing education by NJSNA, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation. PI22-3/10-13.

I thought some of my readers might find this interesting. There are clinical trials for a vaccine for ovarian cancer currently going on at U Penn, The Cancer Treatment Centers of America, NCI and the May Clinic. I hope one day they will be talking about a vaccine every woman can take for Ovarian cancer.

Dee

Every Day is a Blessing!

I am thankful for...

L oved ones

I nteractions with my dogs

F riends

E xtraordinary doctors

Dee

Every Day is a Blessing!

Doxil Shortage Development

On the Doxil web page Rob Bazemore , the president of Janssen Products ( J&J is the parent company) , states;

"I am saddened to share news today that Ben Venue Laboratories, Inc. (BVL), our third-party supplier who manufactures DOXIL^®, announced its temporary suspension of manufacturing and distribution of drug products. Click here to read a posting on the BVL website announcing this news and here to read our related official communication to healthcare providers.

This voluntary decision is a result of an internal BVL review, which indicated that routine preventive maintenance did not happen at a specified time for some manufacturing equipment. This required maintenance included steps to ensure that machinery meet all qualifications before being used again. BVL is halting production to conduct a site-wide assessment to determine the potential impact, if any, and will implement any corrective actions if needed.

This temporary suspension of manufacturing by BVL impacts the production and release of DOXIL^®, which is currently in short supply and not available beyond product already allocated to patients in the DOXIL^® C.A.R.E.S. Physician Access Program. We are not able to estimate timing when DOXIL^® may return to the market as BVL has not provided a commitment on when its manufacturing operations will resume. In light of this situation, patients should speak with their physicians about alternate treatment options.

"

For the complete statement please see http://www.doxil.com/doxil-supply-shortage.

Doxil is a doxorubicin Hydrochloride encapsulated in liposomes for intravenous use. The manufacture of Doxil includes a fermentation process ( a streptomyces bacterium is used) and subsequent chemical conversion processes to reach the final drug stage. In Europe, Doxil is know as Caelyx. The patent on Doxil expired in 2009 but it has orphan drug exclusivity until May 2014 . Orphan Drug status is given to those drugs that are used to treat rare conditions with less than 200,000 patients using it per year. Yes, ovarian cancer is considered a rare condition with ~25,000 women diagnosed a year. That status protects J&J from generic drug competition and allows the company to recoup its development and marketing costs.

Prior to teaching I was a process chemical engineer for an over -the-counter product manufacturer. I understand the need for maintenance. I remember how long it took for the manufacturing plant to break apart the pipes , clean & sterilize them and restart. It is not an overnight procedure. It may take upwards of two weeks. Then the fermentation must begin again so that also adds time to the process. My hope is that J&J does not wait to find a new back-up contract manufacturer. In this economy there may be other manufacturers just waiting to fill the void. It will take them the same time to startup the process but then all the women who need it will have access to the drug. Or J&J can give up it's drug exclusivity and allow other manufacturers to produce the drug.

Please don't wait J&J, women's lives are at stake.

Dee

Every Day is a Blessing!

Cancer Caregivers

On Friday, I received a reminder from the The Cancer Support Community that today, November 21, 2011 is National Cancer Caregiver Awareness Day. I thought how nice that there was a day to recognize all those caregivers who give so much of themselves to help their family and friends diagnosed with cancer.

Then a short time later, I read an entry on my niece Chloe's blog, Chloe Yelena Miller entitled "Writing Prompt: Parent / Caregiver Memory". I decided to use that prompt to write about my special caregiver in honor of Caregiver Awareness Day.

Continuing

We were sitting in the warm examination room on the first floor of CINJ. Nick in the arm chair by the wall and me perched high up on the special chair/examination table. My legs were dangling far off the floor.

My gynecologic oncologist had just left the room. It was 3 weeks after my 6th carbo/taxol/selenium treatment. Minutes before she had come in and explained to me how she was recommending I do 3 more treatments. All the spots of cancer that remained after my surgery were gone except for one on the top of my liver by my diaphragm. I quietly told her "OK" . She told me that she was going to write the orders for today's treatment and would be back.

I turned to Nick and said " I don't think I can do this anymore." Tears were brimming up in my eyes. The eyes that had no eyelashes. And I lowered my chin to my chest.

Nick came up to me placed his hands on either side of my face and gently raised my face toward his. He looked me in the eyes and said " You can do this. Lorna thinks you should and I know you can. We will take this one treatment at a time. Do this for me and Terry and Matt."

And I did. I finished all three treatments. And when my cancer returned in 2008, I had surgery and 6 more treatments - all with my caregiver, my husband, my friend by my side. He was with me for chemo treatments, scans, port flushes, and doctor's appointments, putting off things that he could have been doing. He spent many sleepless nights with me, created schedules in Excel to make sure I didn't miss taking any pills, handled health insurance calls and held me tight when the pain was overwhelming me. And he made me laugh.

His care has been a crucial part of my recovery.

Thank you Nick!

Dee

Every Day is a Blessing!

Tonight is Fashion Bingo Night- Support the Teal Tea Foundation!

For more Information see http://www.tealtea.com/Teal_Teal_Foundation/Events.html

Dee

Every Day is a Blessing!