I have been back in Los Angeles for 4 months after living a year and a half in Warsaw Poland. We had planned on staying longer in Warsaw in the hopes that I could find the treatment I so desperately needed but alas it was not meant to be. After being denied treatment at every hospital in Warsaw we returned to Los Angeles where I have health insurance and a doctor waiting to treat me.
I have seen my doctor a few times since our return, although it has been determined that my cancer has indeed returned I don’t know what stage it is at, I never even bothered to ask. At this point I don’t really care what stage the cancer is, it doesn’t really matter. When I was diagnosed 4 years earlier I was stage 4, the highest and worst possible stage available. I beat stage 4 if only for a couple of years but I did indeed beat it so I know for a fact that I can and will do it again. When I returned to the US 4 months ago I had swollen lymph nodes throughout my body, I actually have more than when I received my stage 4 initial diagnosis. I had at least 6 golf ball sized nodes under my left arm, a potato sized node under my right arm and a lemon sized one in my neck. I was a walking produce stand full of cancer. My abdominal cavity was full of them, the nodes were large and were pressing and surrounding all of my internal organs. Just a few months on a new and extremely expensive daily chemo medication has already shrank the nodes considerably!
A few months ago I started a new chemo medication called Imbruvica. Imbruvica has absolutely no chance of curing my cancer but it should in theory shrink my lymph nodes and force the cancer back into remission. I take 3 of these magical pills a day, if they work I will take them indefinitely, if I stop taking the pills once I am back in remission the cancer will return.
Although the side effects from this medication are limited it is not without risks. Apparently one of the possible risks is with the heart, if I notice any irregular heart beats I have to visit the emergency room immediately. Another risk is due to the combined use of Imbruvica and blood thinners. The lymphoma causes my blood to thicken which has directly resulted in a blood clot in my leg. Because my blood is so thick I have to take twice daily blood thinners to keep my blood flowing. The combination of the blood thinner and the Imbruvica weakens my immune system and leaves me open to infections and more susceptible to getting sick. I have already noticed that I bruise very easily and when I get a cut it bleeds more freely and takes much longer for it to heal.
As I write this I am in bed with the second cold this month, in fact I was in the emergency room just 2 nights ago due t a cold. In the past I would have just worked through a cold but my life has changed and I am now living a life that requires me to be hyper vigilant about my health.
I have a CT scan at the end of the month to verify that the infected nodes are shrinking but so far so good, I can already tell that they are. Although I hope to some day be cured I will be very happy to be back in remission. It will take some months to reach this point but I can safely say that I am feeling better than I have in a very long time.
I could add up the thousands of dollars that we have spent on my medical costs over the past few years but the money is gone so I won’t waste my time dwelling on it, I do however reserve the right to dwell on it another day perhaps. The one number that I am fixated on right now is a number that I was not prepared for, it really blew my mind when I was told what the retail cost of Imbruvica is. I figured it would be expensive but I had no idea how expensive it was. The retail cost for a one month supply of this life saving medication is a whopping $13,500 a month. No pressure but if I ever let my health insurance lapse I will have to come up with $162,000 a year. I plan on sticking around for another 45 1/2 years which will add up to a staggering $7,290,000! Thankfully I have health insurance and I only have to pay a small percentage of the $450 a day medicine but if you add that to my monthly insurance premium and other co-payments associated with the disease the monthly nut is still difficult to stomach.
So after a year and a half living in Poland and searching for cancer treatment we are right back where we started, Los Angeles California. My treatment is going great and I feel better than I have in years. Although we are very happy to be back in LA we do miss our adopted country of Poland and the friends that we left behind. We hope to return to Warsaw some day in the not so distant future to be reunited with the country and people that we fell in love with but for now being back at the beach is a wonderful place to be!
Musings by OZ 