How this Journey Began...

I wanted to create a blog for caregivers. Specifically caregivers of those who have been diagnosed with a rare cancer. It seems that there is barely any information out there for GallBladder Cancer. Any little tip or trick can truly help in the quality of life for those who have been diagnosed. My mother is my best friend. Although I am repeatedly told that "there is nothing" that I can do. I disagree. There is always something you can do in a day to make someone smile. Regardless of how big or small. There is always something. Today, I hope this blog finds just one person that my words may give comfort or knowledge to. Just one.

My mom was diagnosed with gbc about 4 months ago. She had pains in her stomach and thought it was her ulcer acting up. When she was loosing a ton of weight I insisted that she go to the dr for more tests. A CT showed the tumor- and the DR sent us to a local oncologist who knew- NOTHING about this except that it was rare and she didn't fit any of the statistics. So we frantically made a thousand phone calls and got her into sloan kettering a week later. The waiting list is crazy, but thank goodness we knew an old friend who pulled a string for us. We are now seeing dr fong who is extrememly knowledgable- not the best bedside manner- but what doctors are truly cuddly. :o) Anyway, he said that she had bile cust cancer stage 4 and wasn't operable, and needed to have a stent and a pump pack of chemo implanted. Then we went for more extensive ct scans and the next day he called us back to say that it was gallbladder and she needed to start iv chemo locally. We have gemzar every other thursday and oxaliplatin every other friday- totalling 4 treatments. She was sooo sick in the begining, lost hope, lost a ton of hair, couldn't get the meds right. It was terrible. But I started to butt in and make sure that they were really catering it to her body and her reactions.Sometimes she can be very quiet and her details are not accurate because of the meds. We finally came to a good mix of zofran (extended for 5 days), emend for nausea, lorazapam for anxiety, dilaudid for pain, bentyl for pain, nexium, centrum, a shot of neulasta, decadron (a stroid for energy and appetite) and sometimes compozine. Mom tells everyone that she wouldn't have made it though that time without me. The small things that I did to help her to remember her meds, to drink fluids, to eat- to question the medical staff and take notes. It made a tremendous difference!

Then we went back for another round of ct scans at msk and we are now operable! It only shrunk 10% but that's enough to have a surgery discussion. So we are prepared to have a 50/50 chance of getting this thing out of her. The lymph nodes are inflammed but they will do a biopsy to see if they are cancerous. If they can- they will take out the gallbladder, 80% of the liver, reconstruct the bile ducts- and we are done! But there is a 50% chance that when they get in, it will not be operable. So we have gotten cleared for a clinical trial with dr kemey at msk for hia therapy. The silver disc that is surgically implanted to give chemo 100x to the liver. Hopefully this will shrink it and in a few months we can talk about operating again.

So here are some tips and tricks that I learned so far. In the begining I had to do everything for her. As she went through denial, anger, depression.. then I started to empower her and give her small tasks to slowly make her stronger and give her hope. I did our nails to match- pink with sparkles, I took her to the park to sit and read her book in the sun, we made muffins together and laughed over old pictures.

Here are some things that you can do to help

* Ask their opinion on the news, events, movies... it's important that they remember who they are and what their opinions are.

* Lay out the meds so that it's not in their mind, it's a part of their life- not their whole life. I took little bathroom cups and wrote- mon am, mon 2pm, mon pm.. etc. I put the meds in and stacked them for the week. She used the cup to take the meds and drank water from it and when she throws them out- she feel accomplished and never has to worry about what to take, when.

* Demand for Emend when they are on chemo. I pushed for it the first time and they said no, to wait until she needed it. big mistake- everyone needs it. PUSH harder.

* If your insurance company gives you a hard time about the amount of pain meds in a certain amount of time, up the dose and change the amount. They wouldn't give us 120 pills for 2mg- but if I asked the nurse to make it 90 pills of 4mg. they would. so we cut them in half if we needed it. there are a ton of tricks on this one. Talk with the pharmacy at the local hospital- they can teach you alot as they deal with this all day long.

* plan a day at a local spa for a mani/ pedi- spending time as friends and not patiend/ caregiver is so important. regardless of what you do- never forget that every hour is the opportunity for a great memory. savor it.

* do things to keep up the brain activity. I bought advanced coloring books that really helped and made it fun as we used color pencils and played music - ti's also very relaxing and a form of therapy. http://www.ouraytoys.com/display.php?cat=382&zid=1&lid=1&cartid=200803220003566

* buy books with tiny chapters. It's important to keep the brain reading- especially on oxali. they don't seem to have long attention spans and it's difficult to focus. I bought chicken soup for the cancer survivor's soul and it was great. There's another one by a woman that i saw on tv- she's religious and funny too. but her name escapes me.

* new clothes are important. I went to express and old navy for comfortable clothes that have great color, keep her warm and remind her that she is a beautiful woman. I also bought her dior's new J'adore L'eau perfume which makes her smile every time she gets dressed and sprays herself.

*Guilda's Club. Find one in your area. this is a great support group for everyone. I really feel so loved and know that i can always go just to talk and be there and help others. it's a great place. I hope to get her more involved after surgery.

* To help keep family and friends informed, I wrote an update email every 2 weeks. I wanted people to know the updates but not call and ask her over and over again. If she wants to talk about it, she will initiate the conversation and details instead of folks bombarding her on her choices and details. It had really helped.

* cards. tons of inspiration cards and journals. I try to make sure that mom keeps in touch with folks and writes to them normally as well as writes her own thoughts in a journal. The journal hasn't been something she really likes yet- I don't think she knows what to write. they have classes at guilda's club to teach folks how to write their story. maybe she would be interested in that one day.

Well, that's all i can think of for tonight. Surgery is scheduled for the 26th. so this memorial day will be the prep drink, the prep body scrub, and a clear liquid diet for her- yum! WE are just happy to be able to be eligible for surgery - there is hope!

I posted a picture of my mom and I from the summer of 2008 just to be able to put a face to this dialogue. I look back through all of my pictures and wish so much that I took more. NOw, it's a time when we don't take pictures because mom looks at this as a time when the world stands still. Once this is over and things go back to normal- then she will allow pictures. I just cherish the good and the bad times. So happy that we are just together. But, this her wish. So I will honor the no picture rule for now. Jennifer