For some reason that song just came up in my head to put up as the title of this post. We weren’t robbed…and the only tramp would be on our DVD of Lady and the Tramp…but we have been moving around from place to place like Gypsies.

Here we are in beautiful Topeka KS! YAY! It has been a long day of traveling. We are at location 3 of our 4 location vacation. Travel today went well but it was a long day.

Things started off with me doing a mad repacking of items at 7 am EST trying to get everything together. It amazes me because I started off packing yesterday and I thought that I had done a better job on getting everything together. Oh how wrong I was. We actually packed up three boxes of stuff to ship home from Hilton Head. It isn’t that we bought so much stuff while we have been traveling…it is just that once our suitcases exploded in the hotel room in Florida, we could not pack it all back in the way it was. Well I added a fourth box of just MY stuff this morning to ship home. (Lindsay we actually put your address on the boxes so expect at least 4 boxes from UPS from HH). When we checked in at the airport in Hilton Head our bags were still over weight even though we are sending 4 boxes of stuff home through UPS and I had taken out my antique camera from my luggage to have it as a carry on. Well we got lucky with our weights as we were flying first class (you are allowed up to 75lbs per bag I think….well at least up to 55lbs with no charge).

OK so we made it to the Charlotte airport no problem and as we were on the moving sidewalk, going between gates on our 2 hour layover, Mrs Honey sees a Harley gift shop. I got antsy and started making all sorts of noises cause I wanted to go over and look but the moving sidewalk was taking me AWAY from the store! Mrs Honey reminded me that we can walk back to it and that it will still be there. I guess once a kid always a kid rings true for me huh? So I bought three shirts at the Harley shop there in the airport because they actually had shirts that fit me! (Big burley biker that I am). Well while I was basking in that post consumerism glow, Mrs Honey asked “Where are you going to put those? We both already have two carry on items…” Well it wasn’t a total buzz kill when she asked that as I sprouted a great idea for carrying on the shirts because I had room ON a bag (not IN mind you). Well we got that sorted out and got on the plane to KCI.

No issues getting to KCI. Mrs Honey actually caught some shut eye during the 2 hour flight. We did have to fly around a little extra on the way to KCI as the pilot wanted to avoid some weather and make it a smoother flight. The flight was fine for us so the pilot must have missed the weather. We gathered our bags at KCI and headed off to the car rental mega-tropolis to get our car. Mrs Honey chose a car with a Miss GPS unit in it. Miss GPS is our affectionate name for the GPS units after using one in Houston getting to MD Anderson. The voice on all the units we have used have been set by default (or by the previous user) to use the female voice when the unit tells you how far the next turn is, when to turn, or when you have missed the turn and she needs to recalculate the route to get you to the address that you typed in. Let me just say that so far our experience with Miss GPS…wait….MY experience with Miss GPS has not been that stellar. While in Houston I was out till 3 in the morning with Miss GPS trying to find the Walmart address that I had typed in. While on the way from KCI to Topeka I turned when Miss GPS made her little sound to turn and ended up going the wrong direction on I-435 EVEN THOUGH I saw the exit sign that stated the exit would send me in the direction of St. Joseph instead of Topeka. That one I cannot totally blame on Miss GPS as I saw the signs….but….whatever.

We made it in to our hotel here in Topeka (despite Miss GPS sending us around the north end of town instead of the more direct route) and unloaded. Mrs Honey needed some allergy medication as she was unable to find hers in her suitcase (I think that she packed it in one of the boxes to be shipped home…oops). More fun with Miss GPS trying to find a drug store (we found one on our own THANK YOU Miss GPS). At this point I know where I am in town and navigate myself out to dinner at the Aunt and Uncle’s house. Marv started smoking some pork around 10pm last night??? and then also fixed some brisket on his grill today. Lemme tell you something…Marv loves to cook on his grill and I think that he knows what he is doing. If you ask him he will tell you all about the grill and it’s design…he will also go into detail with you about the charcoal he uses and where he gets it. Tonight he also had some BBQ sauce that no one else had opened yet. The pork was spectacular! It was so tender. He brought out the bone from the pork and you could tell that when it was done cooking and he moved it to the serving tray that it just fell off the bone. It was real good.

I got ahead of myself there. We were a little later than everyone expected us to be. Everyone was done eating dinner and some people had already gone off to the kids little league game. Grandma and Grandpa were still there and I think that Grandpa was having seconds on dessert (or maybe thirds). So we had dinner and chatted and hung out for a bit. I picked up a brick from the bookshelf and somehow or another it became my property as Aunt Martha handed it to me and told me to take it home. If you want info about the brick just ask and I will give you the details. Mrs Honey was tired from all of the traveling so we went back to the hotel and unpacked and pulled even more clothes out to send home with Mr Honey’s Dad. Dad was out here visiting his parents and just happened to be here while we were in town. Lucky for us! Mr Honey sent the brick home with Dad along with 4 bags of stuff we pulled from our luggage.

Where the heck did all of this crap come from in our luggage? How did we pack it all in to get it out here in the first place? That my friends just might be a topic for the Coast to Coast AM radio show. It is now getting late and I think that I have dumped enough words out on this post. We will be visiting with family again tomorrow both here in Topeka and then in KC. We will be at our 4th location for this vacation tomorrow night. Sleeps now.

This is just a quick note from Mr. Honey to let you know that we had Internet issues at home over the weekend that led to the purchase of a new wireless router…add to that the fact that Honey’s chemo meds are making her very tired = Honey not posting recently. She wants everyone to know that she is fine but that she is very tired (she has been napping a lot). We have CAKE this Friday and I will try to post a lengthier post then.

We’re leaving soon for Santa Fe. It’s a 6 hour drive, if I remember correctly. We may not have easy access to internet while we’re there and I won’t know until we arrive and try it out. So this may or may not be my last post for a few days. Just wanted to give you a heads up in case I fall silent while we’re away!

Over the past week or so, I have been flooded with gifts from many different people (myself included)! I am so very lucky to have such thoughtful and giving friends and family who go to such lengths to send me these things. I love getting packages, especially when I’m not expecting them!
Click here to see some great pictures of some of the things I’ve gotten. In addition to those, we’ve received a box of yummy prepared meals from Tracy from Omaha Steaks and this and this from my sweet mother(inlaw)!
Thank you everyone for everything tasty, fun, pretty, and educational you’ve sent to me!

Alrighty then.

I have to confess something to you, dear readers. I didn’t tell you the whole truth of our doctor’s visit on Wednesday. I left out a big ole’ chunk of information that honestly terrified me too much to tell you about it right away. But I spoke with my regular oncologist today and she helped calm me down quite a bit. So I’m ready to tell you now.

Since day one, the CT scans have shown three of my lymph nodes to be enlarged. Their locations are near my heart and pancreas. All this time, the doctors just wave their hands and causally brush it off telling me only that the lymph nodes may just be inflamed due to the nearby tumor. Well, Dr. Gupta had an entirely different story. On Wednesday Dr. Gupta started saying things like, “Get your affairs in order,” and “If there are things you’ve always wanted to do in your life, now is the time to do them,” and “It’s obviously in your lymph nodes and there is nothing that can be done at that point…we can give you maybe another year to 14 months.” Gee thanks. It got worse. How, you ask could it possibly get worse? Let’s just say that when Honey asked me what the word ‘palliative‘ meant, between sobs, I could only muster enough strength to reply, “It’s usually the very last chapters in all my cancer books.”

So we came home from that appointment, stunned deep to the core of ourselves. We cried a lot and I slept a lot and my head was spinning ever since. I yanked out my latest CT scan report and picked through it word for word. I highlighted the line in the paragraph that refers to the lymph nodes as, “Findings are suspicious for metastases.” Needless to say, we entered today’s visit with Dr. Kane armed and ready to wag our fingers, stomp our feet and demand some better answers.

She immediately set our minds at ease. She reminded us that we’ve always been concerned about the state of those three enlarged lymph nodes and their status hasn’t changed any more than the status of the liver tumor has. When we asked her if we could go in and biopsy the lymph nodes in question to see if they are, indeed infected with cancer, she said that yes we could do so but it wouldn’t really do any good, since we would treat them the same way that we have been treating this all along. Cancer is cancer no matter how small. The sole purpose for the systemic chemo I’ve been on since December is to cover all our bases: let’s flood the body with the chemo and let it set to work on any and all infected areas; be they lymph nodes, liver tumor, or elsewhere we just don’t know about yet. As we learned the hard way back in September, October and November of last year as we tried desperately and repeatedly to find a diagnosis for my pain, it’s not like you can just draw a bunch of blood, run it through a cancer screen and it’ll spit out the results like “YES for BREAST CANCER, NO FOR LUNG CANCER, etc.” It just doesn’t work like that. Case in point: today’s blood tests show everything functioning well and normal; even the cancer tumor markers still don’t show any big fat bright red flags!

Long story short, things are not nearly as grim as Dr. Gupta made them sound. Yes, I still do have cancer. But I’m not the only person that she is treating with cholangiocarcinoma! When I heard this, I almost got excited. I asked if she wouldn’t mind giving my email address and/or phone number to another one of her patients (a 50ish year old woman) so I can talk to her about it. I have a ton of questions and all I can seem to find in my sex and age group are women who have had breast and/or ovarian cancer, or other more hormonal-based cancers. Actually, Dr. Kane told me she has several patients with bile duct cancers similar to mine. HORRAY!!!! I’m not as unique as I thought I was!! There is hope!

She told me there is always hope. She assured me repeatedly that this chemoembolization is by no means a last resort for me. We are still going forward in our attempts to shrink this damned tumor so we can get in there and resect it, at which point we may consider removing those pesky lymph nodes as well. But that’s a ways down the road and I’ve learned to only take one. step. at. a. time.

So here’s the plan: On March 17 in the AM, I go in for chemoembolization and then stay overnight in the hospital (they don’t have visiting hours so Honey’s going to spend the night with me and ya’ll are welcome to come and visit!!!). The next day they send me home to wait out the side effects (flu-like symptoms). Then on the 21st I go back in and meet with Dr. Kane. If I am handling the embolization well, then about two weeks after the procedure, she’s going to put me back on some systemic chemo (probably a different cocktail/mixture than I had before since all that did was STOP the tumor growth rather than shrink it). Although that Phase One Study I talked about earlier in the week is specifically for people with pancreatic and/or cholangiocarcinoma, I am no longer elligable for it because I have had previous chemotherapies. Which sucks but that just means I can’t take the particular study drug in question. I can, however, still take the other two drugs that would have been part of that study’s chemo cocktail. In the meantime, Dr. Kane is researching the best chemos to try next and I’ll probably get started on that the first week of April. None of this “let’s do chemoembolization and then hold out for six weeks before we do anything more.” Horray! Like I said before, let’s hit this thing with all our guns locked and loaded. ALL OF THEM! This is no time for pansy-footing around!

So that’s that. We had a scare but things are fine. No need to panic. I’m not at death’s door. I am, however, going to live live live! We’re headed to Santa Fe late next week (as long as my spicy taste buds can recover by then — it’s very difficult to eat in Santa Fe if you can’t even handle Taco Bell’s extremely mild nacho cheese sauce without running for a soothing ice cube after every bite of nachos!) and getting things ready for that trip.

I’m trying to get Honey to post on here ASAP. Maybe he’ll come up with something to tell you about this weekend! Have a great one!