Last week I had to go to the hospital here in Warsaw Poland due to a severe pain in my right leg. Based on an experience from the year before when I had a blood clot in my arm following surgery for thyroid cancer I was fairly certain that once again I had a blood clot. The results of an ultra-sound showed that I did indeed have a completely blocked vein in my right leg. My self diagnosis of a superficial thrombosis was correct.
This, apparently is not a normal location for such a thing because such clots usually happen in the lower part of the leg due to inactivity. According to my doctor the Non-Hodgkin’s Lymphoma, which returned earlier this year after being in remission for just over a year is responsible for this thrombosis. The lymphoma, which is a cancer of the blood, caused my blood to thicken resulting in a clot. So sometime next year because my blood decided to get all kinds of clotty and stop flowing I will have to have a two foot length of my vein removed.
The thrombosis itself isn’t a huge deal, comparatively it is but a minor inconvenience. The fact that my lymphoma has advanced enough to cause my blood to thicken therefore resulting in a thrombosis is a big deal, needless to say this complication is a cause for concern.
I am still trying to determine my next step. This unfortunately has turned into a very difficult process. The best possible treatment with the best chance of finding a cure is a new stem cell therapy called CAR-T. Unfortunately this new treatment is still in the trial stage and I don’t qualify for it in the US. In order to qualify I would have to try another second line treatment, if this one fails I will then possibly qualify .
The new CAR-T treatment is available in a few countries including but not limited to Germany, Switzerland and China but the problem is that it would cost over half a million dollars for the treatment! Even if I had the money, which I don’t, it would still be a gamble because it doesn’t work for everyone. It has a great success rate for some patients but for others it is unsuccessful. It is such a new treatment that it hasn’t been on the market long enough to know the true long term results but for many people who have completed the treatment it is believed that they have been cured.
Even though it is most likely the best option for me I can’t afford it and I don’t qualify for the trial so the next best option is what I am now looking into.
So now it comes down to a few options, Allogenic Stem Cell Transplant or one of two new chemotherapy tablets. The stem cell transplant (Bone Marrow) could also lead to a cure but it comes with a whole list of possible side effects including death. The new fancy chemo tablets have side effects of course but they are reasonably minor compared to the stem cell transplant. The issue with these tablets is that the results I would achieve by taking them is essentially temporary. They can help with the symptoms of the lymphoma, they can shrink the swollen lymph nodes throughout my body but they cannot cure me. So its essentially a temporary fix, a band-aid, a finger in the dyke if you will.
If I choose the stem cell transplant and it fails I could then possibly qualify for the CAR-T treatment so it may actually be a good thing if the chemo didn’t work. If this was the case and I was able to be accepted to the CAR-T trial then my insurance in the U.S. will cover the entire treatment.
On the other hand if I try the chemo pills and it works then I will once again be in remission. But here’s the rub, although remission would be a wonderful thing, with blood cancers such as lymphoma it is usually only temporary. It may be a year or ten years but the odds are, especially since the first treatment didn’t work, the cancer will return. I can safely say from experience that looking over my shoulder expecting that one day the cancer will eventually return is a shitty way to live.
My wife and I have been living in Warsaw for over a year now and I have been looking for a doctor for most of that time. The problem has been that I don’t have health insurance in Poland. A dear friend of mine has offered to cover the cost of my treatment but even with this amazingly generous offer after a year of searching I have yet to find a hospital that will accept me as a cash patient.
I currently have one doctor in Warsaw that I have been consulting, it’s a complicated relationship because he doesn’t actually work for the hospital that I meet with him at. Being a cash patient in Poland for small health issues is actually pretty simple but, when it comes to the more extensive and expensive treatments it becomes an issue. The hospital that I have been going to has somehow worked out a system that allows me to pay them to bring in an outside specialist. I really like and have confidence in the doctor but the whole process is a bit confusing and the last thing that I want to be confused about is a potentially life saving treatment.
I am also currently attempting to get a temporary residence Visa for Poland so that I can remain for the duration of my treatment but this in itself has been a long confusing process, a story for another day perhaps. I had an interview last week and the final word is that the only way I can now remain in Poland is if I get a health insurance policy called ZUS. ZUS is the Polish state organization responsible for social insurance. As an ex-pat living in Poland without a job I don’t qualify for ZUS insurance, the only way that I can get it is if I secure a job. If I am able to find a job the company that hires me will be responsible for providing my health insurance and this insurance would open the door for me to get treatment. So I have one week to find a job, if I don’t secure a job and provide the appropriate paperwork to the immigration office within a week then we will have to leave Poland on January 7th. The question is who in their right mind would possibly want to hire a guy that has cancer knowing that as soon as I start work I will have to take time off for treatment. As it turns out last week I received a little Christmas miracle, a Polish friend of mine has offered me a job! He started the process and sometime this week I should hopefully receive papers stating that I am now officially paying taxes in Poland and that I am covered by ZUS insurance.
Even with these papers it is still not guaranteed that I will find treatment in a timely manner. I have asked a friend here in Warsaw to once again act as my translator and attempt to secure an appointment for me to meet with the professor who runs the Hematology department at the Institute of Hematology and Transfusion here in Warsaw . As we are officially well into the holiday season it may be difficult securing an appointment with this professor but, my friend is extremely persistent so I am hoping that his persistence pays off. I have a window of maybe a month that I will have to start treatment so if we are not able to make this work I may have to resign from my new job, that I haven’t actually started, and we will have to return to the U.S.
In the year since we left the U.S. we have maintained our health insurance, at no small cost I might add, because I know that if I let the insurance lapse it will be very difficult to find insurance again due to our copious collection of pre-existing conditions. The insurance that we have in Los Angeles California is actually pretty good insurance. The problem is that my wife and I are essentially homeless in the U.S. Everything we own is in storage and we don’t even own a car anymore. Moving back to LA quickly becomes a major logistical and financial nightmare.
We are stuck in limbo with huge decisions to make and very little time in which to make them. I would love to remain in Warsaw and receive treatment but I am not sure I can navigate the Polish health system and make all of the arrangements in time. I would also love to move back to California and use my health insurance and get started with treatment but I am not sure we can afford to make this happen either.
Right now I have very few answers, I have so many questions but answers seem to be in short supply. The one thing that I am still able to maintain a good supply of is faith, I have faith that it will all come together just when I need it to. I have faith that no matter where we go, no matter what I have to go through my wife will be right by my side holding my hand or holding me up, or both. I have faith in myself and the strength that is contained within me that I will beat this shit and come out the other side a stronger man for it.
As the clock continues to tick and we count down the days to the new year my stress level increases, I should say that our stress level continues to increase. Time is not my friend, I carry a heavy burden on my shoulders and the clock is ticking…….tick tock tick tock.
FUCK CANCER
Musings by OZ 