Woah! I wrote a few weeks ago and I thought I’d have plenty of time to blog before I went to Basel for round two and the time slipped away. I am already done with round two. My treatment date was less than six days ago and I am back home in the United States. I am going to detail out some pre-trip items before I launch into the actual treatment.
I contacted Hotel Rochat and honestly, it’s a great hotel and super convenient, but, it is really expensive. They were unable to offer me the same rate they gave me last time, so I decided to look elsewhere. The hospital “contracted” rate is actually higher than I have seen listed on Booking.Com. I decided to check Airbnb and found a beautiful little flat that is right across the street from the hospital, but, situated on the Rhine river. Plus, it was under 100 CHF a night. That, paired with having a stove, fridge, and coffee maker, I knew it would be much less expensive to run to the store, and pick up what I needed to prepare meals. It was on the top floor of the building, but, it had elevator access, so it was no worries for luggage or weary travelers. The photo to the right is the view from out the window. It overlooks the intersection of Petersgraben and Blumerain, less than a half a block from the hospital to the south, and out the front door and around the corner to the Rhine on the north. Plus, there is a small Turkish convenience store on the corner that is open seven days a week – not a common sight in Basel – and a good place to pick up produce and other small food items, especially on Sunday when the town rolls up its streets.
I used CheapoAir again since they were in fact cheaper than purchasing directly from Delta and they are able to find flights that are more accommodating should you need multiple cities, etc. Another nifty app you will want to check out is Hopper. Hopper allows you to input your travel dates, it reviews the flight information and predicts, based on history what they anticipate will happen with flight costs over time. Only because I knew of a tentative date for treatment in October, I was able to find airfare for that trip for $650 round trip because of Hopper. Most of my flights, being purchased six weeks in advance, have run about $1200 from Minneapolis to Basel with layovers either in Amserdam or Paris. (We are a Delta hub, who partners with KLM and AirFrance.)
Paying for it
This time I decided to wire transfer the money using a service called Transferwise. It was a little bit of a nightmare to set up. Since I was transferring money from Wells Fargo, there was no way to automatically set up the transfer from the Wells Fargo website, so I had to go into a local branch to wire transfer the money to Transferwise’s US location. From there Transferwise sent the money to Basel. The cost between Wells Fargo and Transferwise cost me about $110. Can I say it saved me money? Yes, in the long run. If the credit card I used for round one had an international purchase fee attached to it, absolutely. But, that card didn’t. But, the interest rate on that card, even though ridiculously low at 8.24%, is still pretty high if you are paying off that much over time. But, I transferred it to a credit card that had a 0% offer for one year. The fee for that transfer was right around $500. The biggest thing with wire transferring the money is, you have to have the money. Fortunately, I did because of my round of fundraising with GoFundMe, but, I likely won’t for round three. So, it will be back to the card again unless, of course, I win the lottery. (Mental note to self: must play lottery.) I made a quick chart for this. I hope it is clear enough to understand. The first round of treatment with Y90 is more expensive, so the numbers look so much worse. Ultimately round one was an additional 4%, where round one was about 1%. The caveat here is, for round two, I had money in pocket, which isn’t always an option.
|TREATMENT ROUND||METHOD||EXCHANGE RATE (VARIES)||COST FOR TREATMENT||ADDITIONAL FEES||TOTAL COST|
|ROUND ONE||Paying with one card without an international transaction fee, then transferring the balance to another card with 0% interest||1.06%||11,500 CHF
(Y90 Treatment more expensive than LU177)
|ROUND TWO||Transferring money from my bank to Transferwise, who sends to Basel University||1.03%||10,000 CHF
|$30 Wells Fargo
In regards to transferring the money, as opposed to paying with a credit card what you get there is peace of mind, or so I thought. Turns out, not so much. Even though Transferwise sent an email to both me and the Nuclear Med team, I didn’t really receive a confirmation from Basel, so three days before I was freaking out. What if I got to Basel and they said, “oh, we never saw that payment.” Ugh. I printed every piece of information I could find that would corroborate that I did indeed send my money. Honestly, even the payables person at the hospital wasn’t aware and took copies of everything I brought with. So, not as easy peasy as I had hoped, but, I got my treatment, which was the most important.
I checked into the University Hospital on a Monday and was vivaciously greeted by Pierre, one of the care coordinators on the ward and I settled into my room. I mentioned to him that I wondered if my previous roommate was there for treatment and was pleasantly surprised to learn she was right next door. Although we did not share a room this time, we did get to visit before the treatment round. Since I had transferred the bulk of the 10,000 CHF that was due for this round (I shorted them because I did not calculate the exchange rate correctly – and the banker at Wells Fargo refused to help me figure out the exchange rate…) I still owed them 60 CHF for the treatment. When I got to the payment office, they acted a little like they knew nothing about it. I was glad that I had printed every aforementioned piece of paper, so that I had proof that I sent the money in advance.
Just call me Ms. Dirty Bomb 2016 – The actual treatment
The day went much slower this time. With my first round, I had treatment and was eating lunch at 13:00 hours. This time, I didn’t receive my treatment until after 16:00! So, it felt like a full day of hurry up and wait. Upon talking to the doctors and describing my side effects from my round with Y90, which were minimal, we opted to not use steroids. The two symptoms I had after the treatment were fatigue, which is normal. The second was acid reflux. I don’t normally have that, so it was a new thing, maybe coincidental? Doctor Braun is who managed my care for this round and he told me that sometimes steroids can thin the lining of the stomach a bit, so that may have been the cause of some of the reflux. They use the steroids in the treatment to help with inflammation and pain. Since I had no pain with round one, we decided to skip the prednisone right away, and only use it if I had any pain. A positive side effect (post side effect) from my first round is my flushing was gone. It had ramped up significantly after my surgery the previous fall, and I was taking 600mcg daily of subcutaneous octreotide in addition to my normal long-acting Sandostatin LAR. Also, my liver enzyme values, which had also begun to climb were cut in half after the first round.
Similar to the Y-90 procedure, they will first insert an IV that will administrer amino acids to you for at least an hour you will sit in a chair and they have a table that sits in front of you. On the table this time, they had a small barrier of lead bricks rather than the thick plexiglass box they used for the Y-90 treatment to contain the medicine. The doctor attaches the medication to your IV lines and slowly pushes the drug into your IV. It maybe took him three minutes. I really felt nothing this time when he was administering the drug. When the doctor was done we hung out for a few minutes and talked. He didn’t take 10 paces away from me this time like he did with the Y90, but, we did sit there momentarily just to make sure I didn’t feel lightheaded or woozy. The IV with the amino acids was kept attached the entire time and would run for another four hours after treatment. Again, I experienced no nauseau or any side effects.
After receiving my treatment, I was sequestered to my room for the next two days. They scheduled my Octreoscan for 13:30 the next day, so I spent the next 21 hours reading stuff online, listening to music, napping and staring out into the garden, again. I have really come to appreciate what it is like to be a cat – staring into the world from behind a pane of glass. There was no air conditioning in the room, which was fine for me, since I was able to open a window and lower the blinds. If you are someone who is very sensitive to the heat, you might want to consider bringing a small fan and the correct (type J) adapter with you.
The scan itself was uneventful as usual and around 4:00 Dr. Braun and Dr. Wild came into my room to let me know the results. The scans showed less uptake than the first time, but, that is because there was less tumor to absorb the drug. I was invited for a third round in October, which I heartily accepted. (In fact, I already have plane tickets for that round.) Dr. Wild was not as excited about letting me go to the garden and kind of had to beg a little. He agreed to let me go, but, I had to stay away from everyone and I could only stay out there for a half an hour. I was given the routine discussion to avoid pregnant women and children for 7 – 10 days. Which brought up two questions for me…
Pets and Sun Sensitivity with PRRT
Since I live with dogs, and they are much smaller than even some children, I was concerned about the radiation that I would expose them to. They explained that dogs do not respond to radiation the same way people do and that I should be okay around them. I also asked if having this treatment would increase my photo sensitivity. Dr Wild also said no it would not make me more susceptible to sunburn. (I guess we just have to blame my freckled Irish pallor on that.) On a side note, the day after I got home I rescued a domestic rabbit who was hopping down my alley. I am actually a little nervous about my radiation levels and the bunny. I might ask them if their is any risk to other smaller animals.
Out to the garden
I Skyped my Mom, who stayed stateside this time to tell her the news. We chatted for a bit and then I hit the great outdoors, a taste of freedom. I set the timer on my phone once I hit the garden and I walked the whole time. It was a gloriously sunny and warm day and it felt good to be out in nature. The garden was typically summery, lots of lilies, fuschia, and anemone. The garden was very busy, so I guess I can understand why they wanted me to avoid people. If groups got too close, I would move to another area. As you probably have already figured out, one of my favorite pastimes is photographing flowers, so much of my time was spent doing that. I spent the entire 30 minutes in the garden and when I got to my room it was dinnertime. Once again, I have to mention that the food in the hospital is very good. It is very fresh and with each meal I requested a small salad. Each time it was a different type of green (not just iceberg lettuce). It is so nice that they honor the fact that health comes from healthy choices – starting with your diet.
My last night
My last night in the hospital was super chill. I ate dinner, took a long nap and then propped up in the window (my favorite place) to watch the sunset. The rooms are perfectly situated facing west that you can watch glorious sunsets in the evenings. Listening to music, I watched until every bit of the sun faded into the horizon, reflecting on rounds one and two and how easy they have been for me considering how my previous surgeries have irreversibly changed my body, both from an internal and external perspective, my spirit and my emotions. I have been lucky. I have been eligible for surgeries. I have found teams of doctors that take to heart my best interests. I have been, for the most part, really damn healthy.
I had made it through round two – with no side effects. I felt like a rock star. A radioactive rock star.
>>> Part Nine