March 3, 2015 I returned to Istanbul and Hannie arrived. Immediately we started working on a different #plan. Initially it was to try and go to the US (the MD Anderson Cancer Center in Houston, Texas: https://www.mdanderson.org). My brother had a friend in Texas and apparently the MD is one of the best in the world but this is America people. Shit is already expensive let alone healthcare! I did some mulling over and spoke to my insurance company. Apparently since I took a job overseas my insurance policy became extremely restrictive. I could either only be seen by a doctor in Istanbul or a country where the cost was comparable. So regarding the US they would cover the portion comparable to Istanbul ($5,000) and I would have to pay out of pocket the rest ($45,000). Are you fucking kidding me??? $50 grand just to have a consultation? This is why there is a huge problem with the US healthcare system and why so many people die unnecessarily. I remember when I had my third #surgery (more on that later) and it was outpatient meaning that I only spent at the most 6-8 hours in the hospital. The cost for taking up a bed for a total of 2 hours, check in and recovery was about $10,000. And for what? All they gave me after the surgery was a ginger ale and a small stingy pack of graham crackers. When I find the receipt I will post it. Fucking unbelievable.
So after many, many, many, conversations (at least 2 full days and I’m not exaggerating) with my insurance company, I chose London. Just to get them to agree on London was a #nightmare. I spoke to my insurance, I spoke to my local HR representatives, I spoke to HR at headquarters, I spoke to the people in charge of overseas care, and I spoke to everyone possible. My insurance company kept insisting that I stay and get treated in Istanbul. According to their ‘medical experts’, of which I had asked for their qualifications as it is my right and of course I never got to see any, they said that I could get the same level of treatment in Istanbul. Are you kidding me? After the #bone marrow biopsy they performed on me while I was fully awake! After not telling me about an additional node that was found in my abdomen and you could clearly see it on the #PET scan! (Keep in mind that all of this is happening at the same time that I am recovering from the #surgery of the removal of my #tumor and the effects of having #cancer.) I even went as far as trying to apply for additional insurance to see if I could get coverage in the US or anywhere but Istanbul.
And so I #fought, and I #argued, and I #pleaded, and I #begged. I could not #sleep, I could not #eat; I was chain smoking and drinking just to calm my nerves and give myself some reprieve in the midst of all the #chaos and #bullshit. Finally Hannie suggested I write an email to HR, the insurance company, my managers and directors – detailing the events and spelling out to them why I refused to be treated in Istanbul. [The email is at the end of this chapter.] Of course! Why hadn’t I thought of that? Because I was losing my fucking mind that’s why! I wrote the email and it worked. Within approximately 4 hours on Thursday March 5, 2015 (3 days before having to leave for London) I received approval for my non-emergency medical evacuation. I was very fortunate to have several individuals on my side who understand the emergency circumstances of my condition. I was diagnosed with #cancer for fuck’s sake. Time is of the essence. But do you think insurance companies give a shit? No, of course not! You are just a number in a database of millions.
I needed to leave for London on Sunday March 8, 2015. So I had a little less than 3 days to plan flights, accommodation, get my samples from the hospital, pack for who knows how many days, make sure my flat was in order and get the hell out of there. Of course that was not going to be easy. At least since I was approved for non-emergency medical evacuation, flight and accommodation was taken care of by my organization. Getting the samples was another issue. I immediately called and told them I needed them ASAP. They said sure they would be ready by Friday. So Hanne and I went to the hospital and guess what there were not! Surprise, surprise. The request hadn’t even gone through! I had to get my office involved, as I knew barely any Turkish at that time. I told them I was traveling Sunday evening and I needed them fast. We went back on Saturday and again they were not ready. I refused to leave. I waited at the lab until they gave them to me. These were samples of my bone marrow biopsy by the way. I already had the images and disk from the PET scan, as well as all my labs results (translated and paid for).
It was like a shotgun wedding. Everything was happening so fast. I literally packed my suitcase with almost nothing in it, not knowing how long I would be gone for and also not really caring what I brought with me or not. I was on a mission. The plan was to see doctors at both The Royal Marsden and The MacMillan Cancer Center or a third opinion. I ended up choosing MacMillan and immediately got a good vibe (also as I mentioned in a previous chapter a friend had a family member that was treated there by one of the best oncologists in the world – Prof. Goldstone). The Royal Marsden seemed incredibly pretentious as they said they would only see people if you accept to be treated there prior to coming in for a #consultation. How are you supposed to know where you want to be treated if you haven’t had a chance to scope out the place??? The plan was to get a third opinion and I felt comfortable with MacMillan. At this stage I had two somewhat similar diagnoses but also quite different. I needed a final diagnosis.
THE EMAIL: DATED MARCH 5, 2015 [18:31pm Istanbul time]
(Names, etc. have been removed to maintain confidentiality – also some of it may not be grammatically correct, as I was not in a good state of mind and time was of the essence.)
I have spoken to ‘my insurance’ and I have been approved for treatment in the UK. However, they are only covering the cost of the treatment. They informed me that my case is under consideration, by the ‘organization’, for a ‘non-emergency evacuation’ where in that case I would be eligible for travel and accommodation. Because Istanbul is my duty station then anything outside is considered out-of-country care that I understand however, these are extenuating circumstances.
I want it on the record that to even get this far, it has been an extremely long and painful process. I made it very clear from the beginning that for me seek treatment in Istanbul was not an option. Everything that I had done so far, including traveling for a second opinion, had been covered mostly by my own expenses. I have also tried not to have this interfere with my job, but I had to postpone my training mission when I received my diagnosis.
I have agreed to go to the UK because this is what ‘my insurance’ will cover, but I will be very clear that this is not my first choice. My first choice is MD Anderson in Houston, Texas. To that event, I have been looking into getting secondary insurance (paid by my own expenses) just so that I can be covered in the USA. It seems that ‘my insurance’ is considering cost over my health.
My reasons for not accepting treatment in Turkey are as follows:
1) I have been diagnosed with Non-Hodgkin’s Follicular Lymphoma, which is not curable. Even with treatment it can go into remission, but it will return in aggressively. The treatment is only for suppression therefore, palliative care here is very important.
2) Palliative care in Turkey is non-existent. When I had my bone marrow aspiration and biopsy I was under no anesthesia or sedative. I told the doctor that it takes time for my body to metabolize the sedative however; he did not wait long enough. If you are aware of this procedure you can imagine the level of pain. Even the doctor himself was extremely apologetic and aghast that I had to go through that.
3) The language barrier is a problem. When I had the excision surgery to remove the first swollen lymph node it took over an hour after I woke up for them to bring me any pain medication as well as water. My friend that was with me had to run after the nurses multiple times to get their attention. They checked on me once. (I have seen the doctor’s a few times since the surgery, told them that I was still in pain, and was told that that is completely normal and brushed it off).
4) When I requested biopsy samples so that I could take them to a different doctor, the request never went through. I had to call back and get someone from HR here who spoke Turkish to request them urgently for me.
5) It is inexcusable that a place called the American Hospital does not have someone that is designated to assist patients who do not speak Turkish. There have been multiple incidents of miscommunication and lack of communication regarding my diagnosis and proposed course of treatment.
6) I have only been in Turkey for 4 months. This is not my home. I have not been here long enough to even feel settled. To be forced to choose another option/center than the one I am comfortable with is unacceptable.
I would like to know from ‘my insurance’ who are the names of the medical specialists that they are discussing my case with. I want to know their qualifications and if they have any experience with NHL (Non-Hodgkin’s Lymphoma).
What I am requesting is to have travel and accommodation approved for the UK. My upcoming appointment, as ‘my insurance’ is aware, is this Monday March 10, 2015.
My type of lymphoma requires one doctor that is in charge of my case. That means that I will be travelling back and forth multiple times a year, as part of the treatment requires annual checkups every 3 or 6 months.
Even though my primary choice is to go to the US (I was born there, I live there, that is my home where I feel most comfortable) I am willing to work (and have been working) with ‘my insurance’ based on their policies and procedure. I only ask that they meet me halfway.
Thank you for your time.
APPROVAL FOR LONDON: DATED MARCH 5, 2015 [22:51pm Istanbul time]
(Names, etc. have been removed to maintain confidentiality.)
HSD’s Medical Officer has reviewed the documentation concerning your request for medical evacuation travel. We are pleased to share with you that this request has been approved. Evacuation travel is authorized as economy class, unaccompanied: Istanbul/London/. Up to 10 nights subsistence is approved for this trip. During your stay in London, if additional time away from the duty station is required please send to my attention a letter of medical justification from the physician rendering your care.
It will be important for you to carry a copy of this letter with you throughout the evacuation. If you have questions on the above information regarding administrative procedures during evacuation travel, please contact me for assistance. On behalf of Field Health Services, we send our wishes for safe travel and successful medical intervention.