I went into remission ahead of the two-year projection and everything was perking along fine. Then two years ago, out of the blue, my cancer went active again. As a result, I was a bit unnerved when I arrived at MD Anderson. Dr. Jabbour ordered another bone marrow biopsy and highly specialized blood tests. It was confirmed that my cancer was active but I hadn’t developed a full resistance to Gleevec. I was to stay on Gleevec unless my numbers reached a certain percentage. Once that happened, with Dr. Tan monitoring me, I was to return to MD Anderson for a new chemo that wasn’t yet approved by the FDA. It would be my only hope outside a complete bone marrow transplant. Even at that, I was a poor candidate for a transplant. Otherwise, I was to return to MD Anderson in one year.
Over the next year, my cancer stayed active as the numbers went up and down but stayed clear of the nasty threshold. Upon my return visit to MD Anderson, I tested negative. It was then that Dr. Jabbour told Eileen and me that it was a nearly 100% chance that I would not have come out of remission when I did. It was not good that I did. It was even worse that I stayed active for a year. However, things were hopefully back under control now. That was this past August.
A mere three months later, my cancer went active again. That is when Dr. Tan told me that if my numbers were up in February, he’d send back to MD Anderson…ahead of my scheduled August 2014 appointment. I’ll get these results from Dr. Tan in two days, Friday.
That is the basic chronological timeline of my journey with leukemia thus far. Yet, there are two major missing components. The first is the cost and the second is the emotional/spiritual component.
It’s very expensive to get sick in this country. The sad thing isn’t just that there are people without insurance; it’s that health care costs are so high that it necessitates insurance. In 2009, Gleevec was $5,000 per month. It is now over $7,600 per month. I’ve been on it monthly now for almost five years. Thankfully, our insurance has paid very well during most of that time. Yet, as deductibles and out-of-pocket limits rise, it gets more expensive every year. As we hear more and more reports of the drugs for cancer patients being cut out of the new Affordable Heathcare Act, it gets quite disconcerting. We still have our insurance through Eileen’s work but we don’t know what will happen when the full effect of the healthcare law hits. We could only pay the full price for Gleevec for a certain period of time and then that would be it. Well, not quite. I most likely wouldn’t take my daily chemo. I can’t imagine taking it until we’re flat broke and then dying, leaving Eileen in dire straights…just so I could live a little longer. I say that now but I hope to never have to test this bold assertion!! Well, there’s always the hope that the patent for Gleevec isn’t renewed (the patent expires in 2015) and it is allowed to become generic…providing I’m still responding to it and not having to take a different and equally expensive new chemo drug. Either way, Gleevec becoming generic would help a lot of people.
As far as the emotional timeline goes, it has been quite a ride. I want to live to a ripe old age just like most people do. Even more so, I want to live because it seems that Eileen, the kids, the grandchildren, and even a few of you like having me around!! While I may be a bit short on redeeming value, Eileen is the most saintly person I have ever known. If for no other reason, and speaking more truth than jest, I pray that God keeps me around in reasonably good shape for as long as Eileen will have me!! I take comfort that Eileen greatly wants me around; I hope she and the Lord have this thing worked out in my favor!! In truth, it seems many of the blessings and graces I enjoy are because God’s blessings and graces upon Eileen encompass me. So, until my appointed time, even if not for me, by the grace of God I seek to persevere for Eileen… the kids and others too.
The spiritual timeline hasn’t been as rocky, at least not too much more than the usual ebb and flow of my normal faith life. There’s a part of me that is surrendered to whatever will be. If it’s my appointed time, then away I go. If it’s not my appointed time, then I’m here to fight for every breath, within reason. Again, I owe it to Eileen and the kids to not only take reasonable care of myself, but to also fight against the health challenges that face me. Anyway, during this journey, my faith has been enhanced through the support and prayers of so many of you. While I don’t generally publicize my difficult times, it seems to never fail that when things are especially tough that someone says or does something to give me a stark reminder that God still loves me and still cares: “His eye is on the sparrow, and I know He watches me”.
So, the next marker in the timeline is two days away. I’m almost five years into this.
It’s approaching crunch time, as I’m also about five years away from the original ten-year projection of Gleevec’s maximum effectiveness for me. Wow, that went fast!! Fortunately, there are now other front-line chemo drugs to use in case Gleevec fails early. The FDA has now approved the experimental drug that Dr. Jabbour mentioned. There is already more hope on the horizon than there was even two years ago. It would be a blessing for many CML patients if the new drugs prove to be as effective as what Gleevec has been.
Anyway, regardless of what Dr. Tan tells me on Friday, your prayers and love lift me. As I mentioned the other day, I prayerfully seek to be back in remission. It means so much to my projected longevity. If not remission, then I pray for a continued low aggressive state of the cancer. High numbers will unleash a likely poor prognosis. Regardless of the cancer test results though, I pray for the grace to be the husband, father, and “neighbor” that I am called to be. May the Lord stand in the gap of my inadequacies or stand in my absence.