July 11: Medical Tourism

warning it’s a long blog…

So it’s official, I’m a medical tourist. Apparently, this is quite the growing industry: $439B global market. And you can see it here at the Cleveland Clinic. This campus is enormous and brand new. It has state of the art technology, modern design, luxury accommodations, and spa music…need I say more. Just arriving here was intimidating – it looked like I was pulling up to an airport with all the cars, drop offs and travelers with luggage (Luckily I’m an experienced travel – even got upgraded this morning on my flight. It is actually way busier here at the Clinic than the Cleveland Airport). After they gave me a map of the campus and some directions to the Taussig Cancer Clinic – Radiation Oncology, Gamma Knife and Diagnostic Imaging Center (I still have to google what Gamma Knife is), I stopped at one of many lovely restaurants and grabbed a vegan bowl. I checked in nice and early for my appointment and enjoyed some quiet time to get some work done. They also gave me a cool tracker so they can easily find me in the center.

Now there was a small fire drill at the beginning of my appointment (which was at 1pm) they said my medical records hadn’t been send. This was news to me, as I had my Radiation Oncologist fax over the records and I submitted the request to have my PET scan CDs sent via mail. I was told they wouldn’t schedule my appointment until they had the records in hand – thus when they scheduled my appointment I assumed they had them. Additionally, they aren’t clear which records they need or how far back – I have 8 different doctors each with a piece of my puzzle. But me being me, I wasn’t going to let that stop us. I had my laptop so while I waited in the office after they took my vitals, I downloaded all the medical records I could find from the patient portals and emailed them to the doctor. I also had my timelines printed and ready to go.

I saw my Radiation Oncologist from about 1:30-2:30. She also told me they actually got me an appointment with a Medical Oncologist at 4pm (mind you I have a 4:30pm flight home and they are just telling me about this). Luckily, I’m an experienced traveler and knew there were 2 more flights to Atlanta at 6:30pm and 7:30pm I could take, so no worries. They were also going to squeeze me in earlier which was great.

So here’s the low down on my Radiation Oncologist visit:

• We walked through my whole history in detail. I reviewed my printed timelines and she was able to find my medical records loaded in their system. She also had the fax my Atlanta Radiation Oncologist already in the system so we were covered.
• After the review she explained “you have options” – which seemed to be 1) do Radiation or 2) not do Radiation. She was about to launch into why she was recommending it when I told her I was all in for the Radiation so we were able to skip the convincing of me.
• She mentioned there are two treatment plans we could do:
  • Option 1: lower and longer: 5 weeks, daily with a lower amount of radiation each day
  • Option 2: shorter and stronger: twice a week for 4 weeks with a higher dose
  • She recommended Option 1 because it will have less side effects and I’ve already done radiation so the side effects will compound – I also picked Option 1 because I have to fly in for the week anyway, so it doesn’t really buy me anything if I still need to be there twice a week – plus 4 weeks instead of 5 doesn’t move the needle. Option 1 it is.
• She’s going to do a targeted field locally. This will be good as they will stay away from my lungs, heart etc and just treat the local area with a generous margin.
• She also said you can do radiation during chemo, but based on where I’m at, she didn’t think that was necessary and would rather see me heel from chemo and surgery before coming in.
• Thermal aspect of the radiation: twice a week we’ll warm the skin to 109 degrees (it’s a little hotter than a hot tub which I’m fine with as I love heat). Then we’ll do the radiation and since it’s targeted, no arms over my head or weird breathing. The thermal radiation will take 1.5-2 hours total which is 1 hour of warming and then 30 min of radiation vs. regular days will be 30 min of radiation.
• Here’s the schedule we’re thinking:
  • TBD in August/September – Post Surgery – Video call to see how I’m healing
  • The Week of 10/7 – Simulation visit in Cleveland to do the mapping. She said from there she can turn around the plan to start the Monday after. I picked this week because we have our company meeting in Cleveland 10/10 – 10/13, so it’s perfect. I’ll be there that weekend anyway!
  • 10/14 – start Radiation:
    • Mondays: Thermal Radiation 2 hrs in the afternoon (I would normally fly in early morning)
    • Tuesday/Wednesday: regular radiation – 30 min
    • Thursday: Thermal Radiation 1.5 hours
    • Friday: regular radiation in the morning 30 minutes, fly out in the early afternoon.
    • 11/15 would be my last day of radiation! That also gives me a week of buffer until Thanksgiving!
• She said it will take about 6 weeks to fully heal from the radiation. I will talk to my plastic surgeon about his timeline to do the final reconstruction. I’m torn on timing here. I’d like to wait until I know we’ve cured me, but based on this plan I will have VERY uneven boobs so I’ll be ready for the implants. Luckily this will be winter, so sweater stuffing is not a problem.
• So the good news from her:
  • Because this is local and we have “minimal disease” we’re in a good position. She again said I’m in a “unique population” – I’m ready to be in the regular population.
  • She said this type of radiation is 60-70% successful
  • She also noted we may be able to re-expand the skin with the expanders, but to talk to my plastic surgeon – now I need to find someone who’s done this!
• Downsides:
  • 10% risk of blistering around my scars
  • I may have more side effects because this is my second round and things will compound
  • Skin may tan, darken, become “heavier” – not sure what that means
  • Week 3 – I will get tired
  • 2-3 weeks post-radiation I may have more side effects
  • 1 in 10,000 chance of developing cancer later in life due to the radiation. I’m hoping they can keep me alive long enough for them to cure this cancer I may get in the future.
  • Now the worst side effect she mentioned, which apparently happens in 5-10% of patients, is a skin ulceration or in her words “a wound which doesn’t heal.” I’m picturing something out of the Chernobyl HBO series I just watched. She said there’s treatments for this if it happens. I figure we’ll cross that bridge when we get there, plus my plastic surgeon will be replacing the skin with some from my back so may be a non issue
  • So even after all this I still signed up! None of this scares me.
• She also mentioned there is Hope Lodge which offers free housing for travelers, but the catch is you have to have someone not receiving treatment with you. I’ll start researching this stuff later. The travel is the one thing that doesn’t stress me out.
• So we shook hands and then I ran up a few floors to my next appointment

Next on to my Breast Medical Oncologist (BMO) visit. They got me in super quick, I was down there at 2:40 and I was walking out by 3:30. They were so accommodating to squeeze me in between patients. And spoiler I made my 4:30 flight! So here’s my highlights from the BMO:

• We reviewed my whole history – I walked him through all my project plans etc – He said I’m the most organized person he’s ever seen and he loved it
• He agrees with my treatment plan. He said as long as the biopsy of the pimple yesterday isn’t cancer then we continue how we’re going. If it is cancer then we may consider moving up radiation or surgery
• He added two tests to add:
  • PDL1 test of any of my tumor specimens – This test can help determine if I’m a candidate for immunotherapies. Hopefully we won’t need more treatment options, but I love hearing we have some
  • Next Generation Sequencing – Sounds like this new type of sequencing could provide some more insight and maybe open up some other treatment options.
  • Overall, he agrees with my plan and prior treatments and said to let him know if I have any questions and to come see him when I’m in for radiation.  He was very friendly and also commented on my positive attitude and how that helps.

So overall a super successful trip! The doctors were lovely and so was the facility. With that, we just need to get through the chemo/surgery and hopefully we’ll have tremendous success at the Cleveland Clinic. So my next appointment is next Friday for round 2 of chemo. I’m feeling good!

Thanks again to everyone for the love and support!