Nancy’s Story: Ah, Winter

Ah winter, you gotta love it. The truth is I actually do. Even this winter, especially this winter. I love the changes of the seasons here in Pennsylvania. When I got sicker and we realized that we had to move from our house with the big gardens, we looked into moving to North Carolina or even Georgia or Florida. In the end we stayed here. I’m not sorry. Our families are here, and my doctors, our friends.

Last month Ellen and I went to a Reiki share at Gilda’s club. It was the second time I had participated. Since I knew what to expect I was more relaxed. After the session, one of the instructors asked if I wanted to hear her impressions. She said she saw me writing down my thoughts and suggested that I start a journal. I smiled and to her surprise, or maybe not, I told her I write a blog for Gilda’s club and enjoyed sharing my thoughts rather than keeping them to myself.

Cancer is a strange beast. At least the kind I have. I did not lose my hair or have radiation burns from my treatment. Sometimes, when I’m having a good day, I forget I am sick with it until something happens like nausea or fatigue. One thing is I have no trouble going to sleep at night. I close my eyes and turn off my brain. No rehashing the day with what ifs or should haves. The morning is different. I wake at six am and lay there thinking about the day coming on. I stretch my limbs and plan what I will wear, who I will see, and who I will reach out to. We are down to one car now, so I plan my work schedule and shopping and doctor visits around my husband’s day. So far it has worked well.

Our husbands will go to the men’s breakfast this Saturday. They seem to enjoy the time with each other and the other men of Gilda’s. Ellen and I will try, again, to attend the Women Sharing Wisdom with Pam Ginsberg next Thursday. Because of the holidays and the bad weather we have not gotten together since October and I miss the group. If you haven’t thought about it, think about joining us.

Don’t get me wrong. Just like everyone else, I am looking forward to spring. If I was still at our other house I would be pouring over my seed catalogs. I don’t want to rush time. In early March I will go to Philadelphia for my scans to see if the lower dose of Pazopanib is working on the tumors. We will also decide if I will stay on it and at what dose. But for now I will get ready for the next snow.

Nancy’s Story: Holidays

I know it’s been awhile since I shared, but we had a month and a half of holidays and birthdays and two trips to the hospital. 

My grandson’s birthday was a week before Thanksgiving, and then we had Hanukkah, Thanksgiving, my daughter’s birthday, Christmas and New Years. Throw into that mix holiday parties at Gilda’s, at my work, and a brunch we planned at our home and let’s not forget my brother’s wedding reception! I did not have time to get sick.

I made it through the beginning of December and we attended the holiday party at Gilda’s.  What a fun evening! Everyone who attended brought a dish to share (let’s not forget the elves in Gilda’s kitchen) and we enjoyed a performance by some Christmas carolers. It was a sparkling surreal evening. Made me want to go home and decorate. 

The sparkle didn’t last. The next day we had a meeting with a disability lawyer we met through a Gilda’s telecommunications series. I am contemplating retiring this summer and also needed to know my options for short term, long term disability, and family leave if needed, if I didn’t feel I could work through the winter and spring.  We left his office and started off to do some Christmas shopping.  I started not feeling well and we aborted the trip and went home. For the first time I made use of the emergency contact number at HUP.  Next day I was at my oncologist’s office having blood work, scans, physical exam etc.  It turns out that one of the side effects of taking Pazopanib is pancreatitis.

The renal cell cancer that I have had metastasized to my thyroid (removed), my lungs, my kidney (transplant), and my pancreas (partially removed). Pancreatitis is very painful and I got headaches and nausea. I was taken off the Pazopanib and stayed off it for two weeks. This made me very unhappy since the last scan I had early December showed that the drug had reduced my tumors as much as 50%.   

After two stays at HUP, the first right before Christmas and the second over New Years, I had a check up last week and found out the pancreas numbers are back to normal and I have resumed taking the trial drug at a lower dose, and am on a modified diet.  I am back to work and am excited about resuming my activities at Gilda’s.  This week Ellen and I will have a Reiki session at the club, our husbands will go to the men’s breakfast on Saturday, the topic being what you hope for in the New Year, plus we’llngo to Women Sharing Wisdom with Pam Ginsberg.

Through all this was the love and support of my family and friends. I guess I have to say the best was watching my Jewish son-in-law from Israel decorating my Christmas tree on Christmas Eve because he wanted to do something for me making him this year my Christmas miracle. Happy and healthy New Year to all of you and see you at the Club!!

 

Nancy’s Story: Pazopanib

I felt empowered after going through the Open for Options program with Michelle at Gilda’s. So after a lengthy discussion with my oncologist, my husband and a few other people I felt ready to make some hard decisions. I chose to start a cancer drug trial at the Pearlman Cancer center in Philadelphia. The drug is called Pazopanib and it is in tablet form. I like being a part of a trial for several reasons. I have a great team and am closely monitored. I was given a printed calendar for four months and it lists all my lab visits, doctor appointments, and scan schedules. I have a protocol nurse who is my first contact. We either talk on the phone or we email. I also have 24 hours contact numbers in case I run into problems.

One of the events we participated in was the Dog Walk. The weather was beautiful and there were so many dogs. Small dogs, large dogs, fluffy ones and short haired, but the one thing they had in common was they were all so well behaved. We don’t have any pets so I borrowed a dog from my friend Ellen. She is a little yorkie named Molly. She weighs three pounds and won the smallest dog contest. I had a great time, but I did notice that I had trouble walking the distance and the heat bothered me. The side effects were starting.

I have been on the Pazopanib for several weeks now. The type of cancer I have is clear renal cell carcinoma (CRCC). This type of cancer is very vascular. So the idea is for the cancer drug to target the blood supply to the tumors. I find this all very fascinating and hope it does what is was made to do. I will have my scans repeated in a few weeks to see.

Ellen and I went to the monthly meeting Women sharing Wisdom with Dr. Pam Ginsberg. By this time new side effects were starting to appear. My tongue swelled and was sore. Couldn’t eat my chips or the spicy wafer cookies I like to eat this time of year. I was also having digestion issues. It is helpful that I can talk to my doctor or my husband, but the ladies of the group and their wisdom and insight is even more valuable.

I have finished the first cycle and turned in my log on which I kept a daily BP number, sugar number, changes is dosage and side effects. I was then given the next cycle of the drug and a new log. Keeping my fingers crossed that this cycle goes smoothly. If there are bumps along the way, at least I know I can count on my friends at Gilda’s to help smooth the way.

Nancy’s Story: “Waiting Is The Hard Part”

As I promised in my last blog, August was a busy month.   I had the Moh’s procedure on my shin.  It has healed nicely and there won’t be much of a scar.  I also had my blood work and scans done for my oncologist. 

The hard part is waiting.  I wasn’t seeing my doctor until the fourth week of August.  I went about my business of working, playing and just living my life.  Sometimes it’s hard to function when I am waiting for results.  So one of the events I attended at Gilda’s was Women Sharing Wisdom w/ Dr. Ginsberg.  It was an inspirational evening.  I was able to share my concerns and received good advice.   Here were other women going through some awful stuff and they took the time to comfort me.  There is nowhere else I could have these discussions except with a few special people.

Work has been more difficult lately.  There is a public effort to remove some of the functions of my department which means that my position will eventually be eliminated.  This also has the public calling and some of the conversations are very difficult.  Sometimes I think to myself, “If you only knew what I am going through you would be” (fill in the blank).  But then I wonder, is there something going on in their lives and they are taking their fear or frustration out on me?

My husband and I went to the Gilda’s club house one afternoon and saw the movie Silver Linings Playbook. We don’t go to the movies very often and this was one we wanted to see.  I’m glad we went.  It was an afternoon of lounging in the living room with new friends watching a great movie.

Now the hard part.  We went to see my doctor and the results were mixed.  Some of the tumors are unchanged but the two new ones on my pancreas have grown.  Not a lot, but enough that we now have to make some decisions.  Do we do surgery again and remove the tumors and risk damage to the remaining pancreas or because of the other sites is it time to go on the cancer drugs?   After that visit my doctor planned to be in touch with the other doctors on my team.  We will then talk this Tuesday and discuss my options.

There is a program that Gilda’s club offers called Open To Options.  I have scheduled a visit with a Gilda’s social worker on Monday.  She will help me list my choices, my personal objectives, and questions to ask in preparation for the conversation with my Doctor on Tuesday.  I think that is amazing.

It’s a beautiful day outside, so I will stop now and go for a bike ride with my husband.

Nancy’s Story: Balancing Work, Doctor’s Appointments, and Gilda’s

During the summer, if I work an extra hour a day, I get to take a day off each week.  I work part time, I always have.  Part of the reason for that is I get too tired working a full day.  So, if I work one extra hour per day, I get to take Mondays off.  The other reason I work part time is so I can schedule doctor’s appointments and not miss work.

So of course this past Monday was no exception.  I have skin cancer.  This is not my primary cancer but seems to be in the spot light lately.  I spent four hours of Monday morning at the dermatologist’s having another Moh’s surgery performed.  In the past nine years I have had one basal cell tumor and five squamous cell tumors, including the one removed Monday.  Of this total of six, I have had four Moh’s procedures.

Now if you don’t know what a Moh’s procedure is, your doctor removes what tumor he sees, then tests the area, removes more if necessary both wider and deeper and  repeats this until he detects no more cancer cells.  The four hours in his office were mostly spent waiting for lab results.

On the June schedule for Gilda’s Club, there was a dinner and lecture: Everything you need to know about skin cancer w/ Dr. Amir.  For some reason we were unable to attend, or I missed the date but I sure wish I had gone.  I have a lot of questions.  For example, why is it so important to have the tumor removed as soon as possible and how does a cancer that sits on your skin travel to other organs in your body?  I’m sure he would have had the answers.  So on Monday my poor doctor got my questions instead.  It was a good thing he could multi task.  He was able to cut and stitch and answer my questions at the same time.

When I was young, Sears and Roebuck use to mail out a toy catalog at Christmas time.  (Yes I am showing my age).  My sister and I use to devour this catalog and pretend that we won the Santa contest and were allowed to pick one toy off each page.  That’s how I feel when the Gilda’s Club monthly schedule arrives in the mail.  First I go through the schedule and circle the events I want to attend.  Then my husband goes through the schedule and circles the events he wants to attend.  More times than not, we circle the same thing.

Today I participated in Tai Chi at Gilda’s Club.  My leg was sore from the Moh’s procedure and I felt a little off balance, but I really enjoyed the peacefulness and I met some new friends.  I need me time especially when I’ve had a procedure done.

August will be a busy month for me as I have blood work, CT scans, MRIs and doctor visits for my other cancer. I will let you know how it all goes on my next post.

 

If you are interested in joining our blog or would like more information about this opportunity to share your story, please feel free to contact us by sending an email to Julia@gildasclubdelval.org.

Nancy’s Story

Hi my name is Nancy. I am also Nanc to my husband, Nana to my grandson and mom to my daughter. What I didn’t like being called is sick.  I am 61 years old and married 42 years.  I can say that proudly because I have been sickly the entire time I have been married and all of my adult life.  I was happy when I made it to my 50^th birthday and thrilled when I made it to my 60^th.

I have loving and supportive friends and family and great doctors. But every time I was facing something medically, it also affected me emotionally and mentally. And even though I had tremendous support, I didn’t always act appropriately to my new normal.   It took finding out my close friend was diagnosed with cancer to feel a tremendous happiness because I could help her with her issues, and I felt useful instead of useless. I could do this for her because I was going through it too.

Then I heard about Gilda’s Club.  I knew it existed but I knew nothing about it.   So the four of us, me, my husband, my friend and her husband went to our first open house and joined that night.  Our spouses came not just to support us, but to get information and hear for themselves.

Why didn’t we go home and think about it?  Because I knew when I walked through the door (the red front door) and met the staff and had dinner with them and took the tour and listened to the very thoughtful speaker, we knew this was the place for us.  I am not just numbers on the lab report, or a body part that is infected with cancer or a sick person, I am a person that needs to be with other people who understand and are good listeners. Someone who asks how are you today and waits to hear the answer. It feels safe and peaceful at Gilda’s and I plan on going there for a very long time and make it to my 70^th birthday.

 

If are interested in joining our blog or would like more information about this opportunity to share your story, please feel free to contact us by sending an email to Julia@gildasclubdelval.org.

 

Share Your Experience With Cancer and Gilda’s Club

Gilda’s Club Delaware Valley is inviting you, our members, to join our team of blog contributors! We sent an email invitation earlier this summer and already have one member who will be sharing her story with all of our readers and we are looking for more. All we ask is that you commit to writing an approximately 300-500 word piece at least once a month.

This opportunity will give those who read our blog a more personal look at how cancer affects the lives of those around us and why what we do at Gilda’s Club is so important.

If are interested in joining our blog or would like more information about this opportunity to share your story, please feel free to contact me by sending an email to Julia@gildasclubdelval.org.

Noogieland’s Camp KIDS

“The focus is less on cancer, more about having fun and just being a kid”

Three of our campers from week 1 doing arts and crafts!

Noogieland is running Camp KIDS for two weeklong sessions this summer thanks to the generous sponsorship of the eBay Foundation. The first week of camp was held last Monday through Friday. After taking a break from camp this week to celebrate the 4th of July, we will start fresh with the second week of camp on July 8.

At Camp KIDS, kids ages 4-12 are treated to a much needed break from the cancer in their lives through activities and fun provided all day long. There are arts, crafts, scavenger hunts, and each day at camp presents a different theme for the campers. The themes include 4th of July, Luau, Ancient Egypt Day, Star Wars, Crazy Wacky Day, and the “Camp KIDS Got Talent” Talent Show to end the week.

Go Bananas Frozen Yogurt will visit camp both weeks to discuss healthy food and provide smoothies to the campers and East West Karate will be coming out for the second week of camp. The campers are provided with two snacks and a meal each day. They will also create their own cookbooks with healthy meal options to take home. Best of all, Camp KIDS is free!

Thank you so much to Noogieland’s sponsors, the Alex Boyes Fund, Foundations Community Partnership, and generous individual donors, who help us make Noogieland and Camp KIDS possible.

Open to Options: Helping You with Cancer Treatment Decisions

Many cancer patients are faced with an overwhelming number of difficult decisions and unanswered questions when they first receive their diagnosis. Trying to prepare for an upcoming doctor’s appointment commonly leaves patients and their loved ones anxious and unsure of the best way to approach their appointment. To help reduce the anxiety of an upcoming doctor’s appointment, Gilda’s Club now offers Open to Options, a free decision support counseling program.

Patients meet with a trained Open to Options Specialist either in person or by telephone. During the session patients are encouraged to say whatever is on their mind. Most describe their situation, their options, their worries and fears, and all of their unanswered questions. All that is required of the patient during the session is that they talk. The Open to Options Specialist will take notes during the session and then organize the notes into a one page, typed list of the patient’s questions that can be taken to their doctor’s appointment.

Patients who participated in Open to Options were given a survey before their Open to Options session and at various points following their session. Data from the surveys suggest that the Open to Options program helps reduce feelings of anxiety leading up to a doctor’s appointment and at the actual appointment. Patient’s feelings that they asked the right questions and got the most from their appointment increased as well. Physicians that were surveyed responded that they also felt the Open to Options program helped create more effective appointments.

If you, a family member, or a friend has been diagnosed with cancer and are facing an upcoming doctor’s appointment we encourage you to consider and share the word about Open to Options.  Please visit our website for more information.

 

Behind the Red Door: 10 Questions with Adele Gill, Development Assistant

Gilda’s Club Delaware Valley: How did you get involved with Gilda’s Club?

Adele Gill: I heard about Gilda’s Club through the family of a friend of mine who had ovarian cancer. When she passed away, after several years of treatment, I felt privileged to participate in the Dog Walk at Core Creek Park with her dog, in her honor.  I was so surprised by how well organized the event was, how large the crowd was, and that every single person was smiling, laughing and enjoying the day.  I knew then, that when I was able to volunteer, it was going to be at Gilda’s.  When the time came it was as easy as going online, leaving my name and number and waiting to be contacted.  It didn’t matter what for, but it just so happened to be the Dog Walk event at WarminsterPark.  Beth Starrantino (now my supervisor) was my contact.  After that event, I became an in-house volunteer at the reception desk entering data and enjoying the new friends I was making.

GCDV: What is your favorite Gilda’s Club memory?

AG: My favorite memory is of my first Dog Walk event.

GCDV: What are you most proud of at Gilda’s Club?

AG: The immense amount of teamwork that goes into producing fundraising events. When staff members and our growing number of wonderful volunteers pitch in together, it is easy to see how things run so smoothly.  It’s that hard work that produces a wonderful feeling of joy and satisfaction.

GCDV: What is your favorite event at Gilda’s Club?

AG: Again, I would definitely have to say the Dog Walk.

GCDV: In a few words, describe what Gilda’s Club means to you.

AG: To me, Gilda’s Club equals love, social and emotional support, education, and hope. It also means fun, companionship, laughter and shared tears.

GCDV: If you could have one superpower, what would it be?

AG: It would be to cure any illness.

GCDV: What is your favorite book?

AG: “The Velveteen Rabbit” by Margery Williams

GCDV: If you could travel anywhere in the world, where would you go?

AG: I would go to Europe.  I fell in love with the architecture in London and it made me want to travel.

GCDV: If you could choose just five things to have with you on a deserted island, what would they be?

AG: I would choose to have a water purification kit, a fully equipped toolbox, a “How to Survive on a Desert Island” guidebook, a first aid kit, and a solar battery powered flashlight.

GCDV: If you won the lottery, what would you do with the money?

AG: I would secure my family, help out my friends, make donations, and buy the clubhouse and donate it to Gilda’s Club Delaware Valley.