Lisa - we're planning a trip in November as well. It's our favorite time of the year to go - the weather is pleasant, our teachers' convention is the week we go so the kids don't miss too much school, things are less expensive and less crowded. Of course we realize everything is subject to change due to health issues. In fact, the June 2011 trip had been rescheduled so many times I lost count. LOL. I see you live in the Philly suburbs. I live in South Jersey but am treated at UPenn. Where do you go for treatment?
I don't have much experience with lymphedema at this point, but do you have to be careful with it if you fly? With driving, we stop every 2 hours because I have to stretch my legs - some chemos can cause blood clots so it's important to get the blood flowing. No big deal - we stop a lot anyway because someone always seems to need a bathroom break.
Penny
Hi Penny - I hear November is an excellent time to go and I'm super excited! DH and I went in December 06 for our honeymoon, and then my entire family went in July 09 (I will never do summer again!!). DH, DD and I went in October 2011 and LOVED it. DD was 3 at the time and we splurged and stayed at the Poly. It was such a magical time and made it really hard to pick a resort this time. In November, we're going to stay at Wilderness Lodge. We decided the Christmas decorations at WL were too much to pass up. I thought about BW, but I have Celiac Disease (in addition to cancer, so it's a joy), and BW has limited food options for me. DD will be 5 when we go next and resort food is important as an option, so WL it is!
I'm being treated at Fox Chase Cancer Center, although I have a second opinion appointment at Penn in January. I'm happy with my treatment - the nodes have gone down each time since I started treatment end of July - but with unknown primary, second opinions are always good. It would be nice to know where this is coming from. They seem to think gastric, although the upper endoscopy showed no signs of cancer. I have no cancer in any organs that is visible to the naked eye or to CT/Pet scans. It's just in my lymphatic system and right now confined to the right groin. My pathology reports show CK7+ and CK20 focally +, so that is why they think upper GI. I guess they think gastric because with pancreatic, I'd be in much worse shape by now. I was kind of hoping for testicular, to be honest.
Much higher cure rate. I don't think I'm eligible for that, though.
I'll have to wear a compression bandgage, probably for the rest of my life and yes, definately on the plane. Since I started treatment early and it's due to the cancer in my lymph nodes, we're hoping as the cancer goes down, the lymphoma will go down. Have to get it under control first, though. I've been doing therapy for 4 weeks and my calf is back down to normal size, but my foot and my thigh are not. I'm going to continue starting 1/7 at Grandview in Sellersville, PA, which is much closer to me. I'll be able to go more often for therapy there and hopefully get this under control. It is uncomfortable, to say the least. I'm supposed to be able to go about my business as usual with the bandages on, but it doesn't seem to be working well. They fall down all the time and I don't fit into normal clothes with them on and eventually I just feel like a pig in a blanket. The holidays were tough, to say the least.
I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not. During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see. I'm still praying for remission.
If the lymphedema is under control by then, I'll be able to wear a compression stocking and keep the swelling under control. They have bigger ones for bed time. I hear they are awful, but whatever it takes to keep my leg a fairly normal size.
If you happen to be at Penn January 15th let me know and maybe we can meet up quick for a cup of coffee/water/quick hug.
Lisa