Surgical Resection

Yesterday we went into MSK main hospital on york ave for the surgery. The plan was to take out the gallbladder, 80% of the liver, the tumor and to reconstruct the bile ducts. they had us come at 9:15am and they immediately had her go in to change and wait in the back room. Mom asked to wait to see her sons before she changed into the hospital gown. My brothers are both in their mid to late 30's and were only about 3 mins behind us getting to the hospital.

They took some blood vials for research purposes and took her vital signs. They used a very neat thermometer that had a rolling ball at the end and it rolled around her forehead and behind her ear for a split second to get her temp. It was pretty cool.

Surgery was scheduled for 12:15 but the case before her lasted a bit longer so she didn't end up going in until 1:45- the wait was brutual for her. She was very anxious and her pain meds were wearing off so she was starting to be in pain. There was nothing we could do but wait with her. We all stayed behind in the waiting/ patient room- 5 of us for over 2 hours or so and the nurses never bothered us. They walked her to surgery down the hall and we went to the main waiting room with a pager in hand. The pager works within a 2 mile radius outside of the hospital, which was great because they wouldn't allow any food or drink into the waiting area because the patients were fasting.

We went to a little italian place on 69th and tried to eat something to keep up our strength. It wasn't easy- I could barely focus on the letters on the menu to make words, nevermind choose a plate. We finally ordered and were muching on some bread and an appetizer when I got a phone call from the nurse to return. She said: "your mother is ok, she is stable. The doctor wants to talk to you about some options. Can you come back soon?" I jumped out of the table and started to gather my things immediately. We decided to have my oldest brother and my sister in law stay in the restaurant since the food was still about 15 mins away.

They pulled us into a conference room and dr fong came in from surgery with a few other folks to explain that the tumor had grown interconnected with the bile ducts, the liver and the gallbladder. There was no way to seperate them- resection was no longer an option. The other plan was to put in the chemo pump to give meds into the liver but because the lymph nodes were also biopsyed to be cancerous, this was now no longer an option. We didn't plan for any plan c. Sometimes I feel like talking to doctors about the next steps is like believing sam champion about the weather on abc news. Sounds reasonable, but never happens.

So they decided to close her back up. They opened, they saw, they closed. wow, every shread of hope left the room. We called the others to join us, the dr left. When they arrived a nurse/therapist wanted us to give them the info with her in the room to make sure that the translation was right. It was painful to hear it again and we all diverted our eyes to something- anything else but each other.

The next hours waiting for her to come out and to see her were awful. I said to the dr and the nurse that 1- she is going to be pissed and 2- she will want to hear this news the second she opens her eyes, and only from dr fong' s mouth. I was very serious about this. The next step was to breathe and regain consciousness. Every one in my family jumped to say they would tell her the news, but knowing what I do now- I KNEW that her reaction and the way the news was delivered was crucial.

The dr came in right after surgery- THANK GOD and it gave her a sense of calming to hear it from him, if anyone. Our next step is to consult with dr kemeny and find a chemo conconction that will keep it from growing larger.

We were finally allowed to see her at 5:30 that evening and she was in serious pain. When we all went back, she immediately started a family meeting to discuss what dr fong had spoken with her about. I was shoked that under those circumstances, the details were crystal clear and positive. Now, I had more hope back. We stayed for 10 mins and then were asked to leave. Instead of 24 hours in the recovery room- she would be transferred tonight to a regular room. The rest of the family left and I stayed with my father. I wrote out an email to all of our family and friends- what a tough email. If you don't say enough they will all call and write asking for more info. If you say what they told you- everyone will cry. I have learned to walk the very thin line of giving this info and always showing hope.

Mom didn't get into her room until 9:30 that night. I began to realize that i never ate lunch or dinner and started dreaming of pizza and ice cream as we waited. I get a bit antsy so I kept asking the timeline and they let us up to her room to wait. We met her roommate, angela. We stayed until about 10:15 because she was in so much pain - I pushed the nurses to change the pain meds as they haven't been working and begged mom to stop feeling shy about pushing the damn button.

I was pryed away that night, wishing i could just stay but knowing that i needed a break. I went to my best friend's apt in the city and we went for a walk to get nacho's and ice cream. I didn't sleep and tried to just stop crying- long enough to remember where to find hope.

Prepping for Surgery- Keeping your Game Face on

We are so blessed and excited to be able to have the chance for surgery. Yet there are so many scary things that come with it. There is a special soap that she has to use the night before and the morning of, there is a liquid that she has to drink the day before, a clear liquid diet that has to be followed the day before, What meds should now not be taken, no vitamin e, no garlic- just things we never thought about. Also, how do you pack for a surgery and hospital visit when there is a 50% chance that it could be a different surgery.

The most important thing that I learned is how to be medically spontaneous. I'm not the most spontaneous person, if you couldn't tell. :o) I have alot of responsibilities and like to make sure that each one is 100% covered. Right now, i'm a bit panicky about who is going to watch my dog (yes that's a picture of him in my old office) for all of the time that i'm staying in the hospital and if the good friend that i'm staying with in the city wont hate me after 3 nights haha.

Everyone in the family keeps asking - What can I do? How can I help? - It's sweet and frustrating at the same time. It's creates a bit of guilt for the patient as they really truly can't think of anything and feel bad about it. I can always think of something that someone can do- which is why no one will ask me, because i will truly come up with something :o) That's when you find out who really does want to help.

Recently I have been able to make a tiny schedule with my dad to have some sort of plan for the week. I will be there from 8am (opening for visitors) until he gets there after work- then I will switch off and stay at my friends. I am so lucky that my work is allowing me to work from the hospital - I didn't really give them a choice but I just heard of 10 more people being layed off-so that's always a concern.

But for my siblings and friends- the are asking for a schedule of who can come and when. It really isn't something that we can accomodate with so many unknowns. Its so important to keep our "game face" on. My suggestion is to have a few days open as an open about 3-4 days after surgery and call and find out how she is doing. That way, you can truly accomodate the patient. Anything else just isn't realistic- sweet and thoughtful, but really not accomodating the possibilities and leaves a large chance of drama and issues.

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