You guys, when I sit down to write these updates I always think to myself “Crap, how am I going to fit everything in? Do I even remember all the details?!” I often rely on my daily journal to sort of guide the way but I’ve been very lazy with keeping it up to date the last couple of weeks and now it’s going to bite me. I guess that’s the nice thing about computers, you can always go back and add or edit.
Ok, so! I’ll start with a quick recap for those of you who don’t follow our Facebook page (you can do so here if you aren’t already).
- Saturday, April 17th we had a big yard sale in my friend’s church’s parking lot. Lots of people donated, many came and bought things, lots enjoyed the hot dogs and pop (mostly Renee… ha!) and some folks even padded their purchase price to help with donations. Another huge thanks to everyone who participated in this in one form or another especially Renee who worked her tail off and Inklings who helped promote the heck out of it.
- Saturday, April 30th Inklings hosted a silent auction with a great selection of donated items – some were worth quite a bit, some were very unusual and lots were both! We even managed to get our visiting author in July, Sherman Alexie, to agree to auction off seats at dinner with him when he’s in Yakima!! (We will be having an online auction this summer via our FB page if you have any interest in donating or bidding. I’ll keep you updated.)
- This was also my birthday (yay!) and Ian made an absolutely amazing Indian feast from scratch including NAAN! Oh, that naan was so good… warm and chewy and soft…. uhh, oh! Sorry! I guess I disappeared for a second there. And there was an incredible cake for after made by the equally incredible Aurelia at Essencia bakery.
- Monday, May 2nd we left for Palo Alto/Stanford California to visit with some docs at the university.
And we’ll start there!
Monday, May 2nd:
Luckily our flight out from Yakima wasn’t early at all – 11:00am – and after our crappy experience last time at the Yakima airport we remembered to get there very very early – 9:30 (for a small town “airport” that’s a lot of time). We just packed backpacks for the trip so there wasn’t any baggage to check in. Our flights and connection went smoothly so no drama to report. Yay! (These flights were very VERY generously donated to us after I found out that Angel Flight West didn’t get my paperwork in time. It was a terrifying few moments but Ian and I were very lucky that day at the same time. Thank you, RD! <3)
Our Seattle to San Francisco flight was complete with entertainment from the folks behind us. “Chris”, I think that’s what his name was, was traveling with his mom back home. I couldn’t figure out from the conversation what they had done in Seattle but dad hadn’t joined them. They looked out the window and pointed out the Columbia River (it was really just the lower waterways of Puget Sound) and the coastline (“See where that white line is mom? That’s the ocean!” “But which side of that line is the water?” We were flying over land, of course, going south along the coast… so… uh.) Chris also tried to teach his mom how to play Candy Crush, an experiment that while sounding delicious may not have worked that well, and they chatted about the train.
My ears perked up when I heard them talking about the train. I thought I might get clues as to how we were supposed to use this confounded transportation system! I figured that they too were going to take the BART to the Caltrain station. We’ll just follow them, I resolved. So… maybe not the best plan.
Once in San Francisco we had to figure out where to get the BART and where to get off to get the Caltrain – I got a glimpse of Chris and his mom as we got off the plane so I kept looking for them. In hindsight it isn’t really a complicated system but without a guide it was extremely confusing that first time. There are no Caltrain stations (the more AmTrak type train) or south-bound BART trains (BART is like their subway system) heading out of the airport but we didn’t realize. We got on the BART and thought we’d get off at the Millbrae station, the first stop, but that wasn’t the first stop. After a few more stops that were not Millbrae I finally asked if anyone knew how to get to the Millbrae Caltrain station. We had to get off and get on a BART going the other way….turns out we were going north rather than south! Annoying. I was very disappointed in Chris and his mother who stared at us as we rushed off the BART… aaand when the doors closed on my poor skinny arms.
We found the Millbrae station, bought our ticket to Palo Alto and soon stepped on board with a crowd of commuters. It would have been enjoyable if we hadn’t been so frustrated and confused. (The snoring person near Ian’s seat did add a bit of humor to the trip, however.) Thankfully the Palo Alto station was right next to our hotel. Hallelujah!
We checked in, went to our room and plopped on the bed to relax and watch a Penguins game. Soon a knock came to the door, “room service!” What?? As a total surprise my friend who had managed to get us a room at the hotel she works at for our entire 3-night stay had also sent us a gift basket full of fruit, cheese, crackers, bottled water, cookies, candy bars and nut bars. I couldn’t believe it! I knew what we were going to be snacking on and eating breakfast from for our trip! It was wonderful. (Thanks again SO VERY MUCH, Kristin!)
That evening we had dinner at the hotel’s restaurant. Fortunately, neither one of us eats very much (especially me right now) and we were able to get away with sharing a steak sandwich and a salad. We even had leftovers to eat for lunch the next day! We went to bed exhausted and trying not to think about all the navigating we’d have to do the following day.
Tuesday, May 3rd:
We had a very early morning. I was supposed to be on campus getting an echocardiogram at 8am but we weren’t sure how far of a walk it would be. We left at 7am and followed Google Maps’ directions to walk to the echo lab. Stanford in its entirety is under construction right now and Google’s walking route needed some improvisation on our part. Luckily we made it to the lab at 7:45, just enough time to find out my appointment was actually the next day. Oy. And this was after I realized that I had forgotten the entire folder containing directions to the various offices would be visiting and all the paperwork I had to fill out prior to my appointments, not to mention the mile I had just traipsed my very deconditioned body through. The woman doing check-in was very generous and said that they might have some late folks or no-shows. If that was the case she’d tuck me in for the echo.
Everyone came, albeit with seconds to spare, for the 8am appointments but someone didn’t show up for their 8:15am slot. I was in! Not only was I in but I was out in 30 minutes! Usually it takes about 15 minutes per artificial valve and can sometimes take almost an hour… maybe that’s just the people I’ve been going to.
I was not looking forward to walking back to the hotel but I needed to have that paperwork and walking was the cheapest option. Almost all the way back to the hotel was a charming vintage train station that had been fixed up with a little coffee shop inside. I got tea and we shared an almond croissant while looking at transportation options for the rest of our trip. Even with relaxing though by the time we got “home” my hips were angry and the back of my right knee was about ready to disown me.
We had lunch and decided to try getting an Uber ride back for my second appointment, something we had never done before. (I know, I know there are probably some of you thinking that we sound pretty naive to not have done that but when you live in a small town with your own car there’s no reason… so… be nice!) It was easier than I thought it would be and while our driver was a bit of a tailgater (tailgator? ha!) and didn’t seem to know where he was going (even though his phone was in his lap on Google maps – yikes!! Eyes on the road!!) we got to campus quickly and it only ended up costing about $7. Things seemed ok until we realized we were in the wrong building. Of course.
We were REALLY in the wrong building! A nice man at the info desk helped us get to a campus shuttle stop just in time to see a woman verbally abuse one of the shuttle employees.
“Get AWAY from MY CAR!” the woman shouted as she was coordinating something with a man in a separate car.
“But ma’am, this is a no parking area…” The shuttle was actually coming in right behind the two parked cars.
“I am not going to talk to you. Get the hell AWAY FROM ME!” said the woman again.
I just had to figure that she was experiencing something pretty lousy that day to be so horrible to a mild mannered, petite woman doing her job. We were in front of a hospital after all. Who knows what her day had been like. (It’s still no excuse.)
As we got on the shuttle I said to the shuttle employee that I hoped not everyone was as rude as that woman.
She sort of shook her head and said, “Yeah, I’m not sure what was happening there…”
“Well, she was being ridiculous. Try not to let it ruin your morning.”
“Oh, thank you… That makes my day…” he gave a sheepish smile as we got on the shuttle.
(Speaking of rude, the shuttle was completely quiet save for one older “gentleman” crowing into his phone about football strategy. He must’ve been a coach or something but, I’m telling you, the shuttle was absolutely silent other than him…. *sigh*)
We reached the oncology department which was a long row of waiting rooms and check-in desks on the right side and window seating on the left. I went to the liver oncology desk (I mean, that would make sense, right?) and was told I was in the wrong place. Thankfully I was just at the wrong check-in desk so we relocated, checked-in and found out they were offering free snacks and water AND massages! Sure enough, there was a little massage chair, like what you see at the airport, tucked into a sunny waiting area just to my left. Oh yeah, after my appointment I was all over that!
In the appointment we met with Dr. Kunz’s assistant who asked me questions and told me a little about the GA68 PET scan. Dr. Pamela Kunz joined us, did a short physical exam and chatted with us. Here are the things we discussed (all of which I brought up to Dr. Pommier at OHSU – I’ll put his responses later):
- She suggested I add a medical oncologist to my carcinoid team at OHSU. I was skeptical of this because Dr. Pommier, along with being a surgical oncologist, works to create medications and treatments for many types of cancer but primarily carcinoid.
- She brought up adding telotristat etiprate to my medications as a way to control my serotonin levels which are still quite high even though I’m not experiencing a lot of carcinoid symptoms like flushing (aka an experience like hot flashes). I looked it up and it sounds promising!
- She does NOT believe that liver transplant is necessary nor that it would be helpful since she has seen new livers acquire tumors just like the livers they were replacing. So, yay and oh… crap.
- Somehow I got the idea that the primary carcinoid tumor is the only one that can create more tumors and that when said primary is removed the other tumors go a bit dormant… She said these are both false.
- The GA68 scan has the potential to come back with false positives for cancer in other areas, primarily pancreatic, and this is usually cleared up with an MRI. However, I have a whole lotta metal going on inside of me (aside from the three heart valves I have sternum wires, pacemaker wires that were left in after my last heart surgery “just in case” and a port) and an MRI is out of the question. She said they might have to do another GA68 down the road to rule out discrepancies. Not. Awesome.
Despite some of these details I liked Dr. Kunz. She seemed intelligent, sympathetic and treated us like people who “get it” rather than some uninformed pedestrians. I’m not a doctor (surprise!) but I do get a lot of the lingo that pertains to my case. So does Ian. I think together we make a very well-rounded, well-informed team and I think Kunz got that sense.
She said that we’ll schedule the scan for about three weeks out and she can give me the results over the phone. (Thank god!) Side note: the scan will be taking place on May 26th.
We decided to try going through the arboretum to get back to the hotel and it turned out to be a wonderful choice. There were stringy eucalyptus trees, kumquat trees, trees that produced little nuts that I thought might be beech nuts but turned out to be something else. It was away from the traffic and we even passed a little cluster of dudes speaking in Italian making it seem like we just might be somewhere in the Mediterranean. Oh, if only…
The rest of our day and evening went really well actually. We found a Greek restaurant that was just a fraction of a mile away in downtown Palo Alto. We had no idea that there was this quaint “city” center just past the train tracks! We ordered our food and walked a couple of blocks to Walgreen’s to get some eye drops and a couple of treats… you know, essentials. Everyone was milling around like it was Saturday in the summer instead of a Tuesday in early May. It felt like we were finally getting a grip on the non-medical portion of our trip.
And a side note: Normally I’ve been lucky to get 2000 steps a day lately. For those of you who use pedometers know that hat’s not much at all. The ovarian cyst threw me for a loop and while my belly has stayed way too round and uncomfortable the rest of me has melted away. Exercise was impossible for a couple of months and incredibly painful or uncomfortable for the rest. But by the end of this first full day at Stanford and in Palo Alto we had managed to do over 15,000 steps, the equivalent of about 5 miles!! No wonder I wasn’t feeling so great… And how is a potential transplant patient able to walk that much?!? The answer is – I have no idea. Most of this process as well as symptoms haven’t made a lot of sense to me to be honest.
Wednesday, May 4th:
Man, I hope you guys read these blog entries in doses instead of all at once…
Our day started a bit later on this day than the one before. I was seeing Dr. Banerjee, cardiologist, at 9am and we had decided to try the free university shuttle that ran in the mornings and evenings. We got on at the bus station right next door which was waiting for the next train to arrive, thus filling to the gills before we headed off. Unlike Tuesday there were people milling about getting to work and classes. Our shuttle dropped us off right behind the building we needed to go to! Heaven!
The Stanford Medical Center is VERY dated looking on the outside in a way that made us feel like we were on the original Star Trek, visiting a strange planet or some sort of Man Men era complex. I’ll let you make up your own mind about it though…
Dr. Banerjee’s office was right next to where I had the echo done the day before – easy! His assistant took my FUUULLLLL medical history from a little before diagnosis (just over 16 years now) and somehow managed to only cram it all onto one page… He did kind of run out of room. Now mind you he had all my records from OHSU but wanted me to fill in the details.
After that bit Dr. Banerjee made an appearance, did a little physical exam and settled in to talk. He told me that he is a pretty aggressive doctor when it comes to getting patients the help that they need and he would review my records and tests with his team to get hings moving. Music. To. Our. Ears.
I told him that since making the decision to go the heart transplant route in October OHSU’s transplant team has sort of dropped the ball. He seemed incredibly surprised. “Since OCTOBER?” (Yeah. That’s what we’ve been thinking too, Dr. B.)
And just like that (Pshfft! yeah JUST!) we were done! We walked back through the arboretum again but using a different route. It seemed like magic because we hadn’t noticed wildflowers popping up everywhere until this walk. We were both so worn out from stress and fear of what the doctors might say. I think there was a bit of tension between us that was finally lifting… although our idea of tension would probably be imperceptible by anyone else… But on this walk we seemed lighter. We had the appointments out of the way, we had “mastered” the trains, we “found” Palo Alto and we’d be heading home the next morning.
Since we hadn’t been walking much that day and we were both hungry for lunch we decided to keep going right under the train tracks and into Palo Alto to go to a restaurant we had passed the night before. Even though we had just had something with a middle-eastern flavor by going to the Greek restaurant we went to Oren’s Hummus Shop for more.
The place was packed! We were lucky to find a table outside where a large open window and the open door let the most amazing fragrances waft out to smack us in the face. Ian got a crisp San Pellegrino and I got fresh lemonade with mint (I quickly made it myself almost as soon as we got home!). We shared falafel gyros and pita (SO soft and fluffy!) and babaganoush… Holy cow. It was even better than the Greek place. I wish I could’ve eaten more, so much more…
We decided since there was the funkiest candy store across the street that we should stop over and get a treat or two apiece. They had crazy things from all over the world. While our favorite candy shop in Pittsburgh seems like something out of Europe this shop definitely was American. Colorful, silly and lovely all mixed together to make deciding very difficult. I picked out some Haribo gummy candy that had wine flavors (it was just kind of fruity) and we each got a Double-Decker candy bar from England with lots of layered goodness. Relaxed(-ish), stuffed and ready to rest and munch candy we headed back to the hotel to watch a Penguins payoff game that Ian’s sister and brother-in-law were at in Pittsburgh. It was fun to text them about what we were seeing. (Especially because the Pens won!!)
For dinner we got a salad from the hotel and finished up leftovers. Thank goodness for an in-room fridge!
Thursday, May 5th:
We got up so early that it almost didn’t seem like the next day. Up at 4am to get to the Caltrain station by 5. Palo Alto was dark and there were crickets singing amongst the tracks. The train was nearly empty. We got off at Millbrae and were able to take the BART right to the San Francisco airport, you know, since we were traveling north. With loads of time to spare we reached our gate and prepared for the voyage home.
So, that’s that. Sorry about the long post and all the food details but since it was the only thing we got to enjoy while we were there I felt like writing about it.
We’re on our way back to Stanford in two days, Monday, May 23rd, and will be there until we come home on the 27th. I’ll be seeing a liver specialist, Dr. Banerjee again as well as FINALLY getting the Gallium 68 PET scan. We’ve had news between our first trip and now but I’ll likely include that in whatever happens in the post about this next time around.
Thanks for reading. I feel like my posts are ridiculously long-winded but in truth they’re as much for me as they are for you… maybe more. If you have questions hang onto them until I write the follow-up post. You may get answers before needing to ask.
And also, last word I swear, thank you to everyone again for thinking of us, helping with travel and lodging and good wishes. We couldn’t do it without you.