Addendum: Thank you all for your prayers. I am cancer free still, and I don’t have to go in again for another 9 mos. Praise the Lord!
It is that time again; I have my next CT scan coming up tomorrow, to make sure that I am still cancer free. I have added many readers since all of this originally happened with me back in late (November, when I was diagnosed) 2009, and so I think it is apropos that I retell what happened to me back then; which will help clarify the significance of what tomorrow means for me (us).
In June of 2009 I woke up with some terrible (sorry) gas pain, that wouldn’t go away (it took a couple of hours). The next morning I woke up, and I still had a little pain in a particular area of my right abdomen; I thought that I must have pulled a muscle or something. Time went on, moving into July, and the pain began to intensify, in fact it began to radiate down into my groin area. By time early August rolled around, I figured that I should go see a doctor, I was pretty sure I had a hernia. The first doctor I saw, in August of 2009, did a physical exam on me, and concluded that, indeed, I had a hernia; he told me that I could just try to live with it for awhile, and maybe within a couple years I would need surgery to take care of it. So I went for about two months, but the discomfort continued to get worse, and even began to move into my right lower back. In September I found a hernia specialist, I went and saw him, and he did a physical on me, but did not feel a hernia; so he ordered a CT scan. A week later I was in getting a CT scan, and in the process of getting that, the CT tech—after the exam had concluded, and he had had time to look at my images—came into the exam room, and he looked nervous and almost pale (and frantic!). He told me that I needed to have an emergency testicular Ultrasound, and so of course I became exceedingly nervous; of course he couldn’t tell me anything, and told me I would have to call my doctor. They did the emergency testicular Ultrasound on me, and I left. I immediately called my doctor’s office, and all they told me was that there were some abnormalities on the scan, and that they would see me in a week to discuss those over with me. So of course I am in complete panic mode, my wife too (and the rest of my family), but because it took them a week to get me in to the doctor’s office, we convinced ourselves during that time that it must have been something not that serious (maybe just a bad hernia or something). So I went to get the results by myself, under this delusion that we had comforted ourselves with during this week. I was taken into the doctor’s consultation room (this is still the hernia specialist doctor), and he came in and sat down a few feet in front of me, facing me. He cut right to the chase, and said there was some bad news; he said that they had found a large mass the size of a softball next to my right kidney, and he said it looks cancerous! My life flashed before my eyes at that point, and my first question to him was “am I going to die?!” He reassured me that I would not die from this (although he didn’t even know what kind of cancer it was at that point), and that we would have to have a biopsy done on it to know for sure what kind of cancer it was. Here is what I wrote at that time on my blog:
I just scheduled the biopsy for this Friday morning at 9:30 am (it will be by a needle guided by CT scan). I would just ask that you would be especially praying that morning, for peace (I’m really nervous about the procedure itself). Pray that the Lord would enter into that mass and make it benign (even if it isn’t already). I have a follow up appointment to find out the results on Nov. 18th (Wednesday at 10:30 am); I know you all are praying, but please remember that day and that time especially. Thank you all, your prayers mean everything to us! (originally written November 11th, 2009)
We had the biopsy done, and had to wait another few weeks (so a month between the time I found out I had this mass, to the time that I actually found out what I really had—there was a small possibility it could still be benign, we thought and hoped!). After a couple weeks we went back to the doctor, and he told us, tentatively (because the final impressions had not been made by the radiologists), that it looked like my cancer was lymphoma (later we were to find out that this was a common mistake with my kind of cancer, because it is so rare); but a week later we received a call from the doctor’s office with the final impression, the lady told me it was sarcoma, and that I would need to come in to the doctor’s office the next day to talk this over in more depth (just to let you know what I was thinking when she said it was sarcoma, and not lymphoma; I had, in this week, talked to a doctor friend of mine, and he had told me that if it was indeed lymphoma that this would be good because it is treatable, but if it was sarcoma that this was bad, really bad because it is not usually treatable and is very aggressive—so when the lady called and told me that my cancer was actually sarcoma, I thought I had just received a death sentence … my head began to spin, and the world around me seemed unreal). So we went in to the doctor’s office the next day, and he told me and my wife that my cancer was actually a very very rare kind of cancer called desmoplastic small round cell tumor sarcoma; he told us that it was so rare that there is no specific treatment for it, and that it is diagnosed like .01% of all cancers in an annual period (so that made us feel good!). He said that it was a surgical cancer, and that he as a surgeon would be able to attempt a resection (removal) of it; he said that he would like to do that in a couple of weeks from that point. As we received all of this news, we just cried out to the Lord, and began researching alternatives (actually my wife and brother in law did).
As “Luck” would have it, we live next to only one of two cancer treatment centers in the country that has a sarcoma center; Knight Cancer Institute of OHSU in Portland, OR. So my wife made called and told them what my type of cancer was, and they got me in immediately; I was hooked up with one of the best and only sarcoma experts in the country, Dr. Christopher Ryan. So within a couple of days we were in his office, and we sat down with him, and he told us what he knew of my cancer; he said that it truly is a rare cancer, and that there is no specific protocol for it. But he did say that I was still fortunate, because mine was acting abnormal, because it was self contained and regionally located in the area it was (normally by time this cancer is noticed it has spread throughout all of the abdominal walls [which is where it starts], and into various organs etc.). After we met with him (and this is what was/is great about this cancer center, all of the oncologists are right there, and they work together as a team), we met with the head of surgical oncology, Dr. Kevin Billingsley. We had already been meeting with Dr. Ryan for a couple of hours by this point, and we finally sat down with Billingsely. He was such an encourage man; he had me tell him my situation, and as I did he sat there with his head cocked to the side as he listened thoughtfully and intently to me, at the end of my recounting he looked at me with a steady and definitive tone and said “Mr. Grow, we can help you, this is operable!” (at this point we still weren’t sure if it was going to be operable, these kinds of tumors usually aren’t)—and so I broke down and cried, at which point he put his arm around me and said “I don’t know why this is happening to you, but we are going to help you.”
After all of this, Dr. Billingsley left the room and began consulting with my medical oncologist, Dr. Ryan; he came back in the room, and said that there plan was to use the Ewing’s Sarcoma protocol on me, with surgery at some point. I received a dual-port in my chest the next day (as I recall), and within a couple of days (like December 5th) I was in-patient in the hospital to receive my first and opening cycle of chemo (apparently we were to find out later the kind of chemo I received was the hardest core you can receive, and still live). Without getting into all these details, I went through 6 more cycles of chemo (which resulted in terrible side effects like: the need for 10 units of blood, pulmonary edema, C-dif, neutropenic fevers, hospital recovery times, neuropathy [which I still have], broken blood vessels in my eyes [with floaters], nightmarish mouth sores (and other places) [which required a morphine pump to control the pain], and I lost, at my lowest point, about 50 pounds [taking me from 200 to 150, and I stand at 6’2”]), and so after 7 cycles of chemo (mostly in-patient), it was decided that I have the surgery. Miraculously the chemo had been working (which usually it is not!), and at the time of surgery my tumor had shrunk from the size of a soft-ball to the size of a golf-ball, and an infected lymph node next to my tumor had been fried. On May 6th, 2010 I had a 7 hour resection surgery; they removed the tumor (with clean tissue margins), my right kidney, and 3” of my inferior vena cave (a large water hose in size vein the feeds from the lower extremities) [they reconstructed this with gortex]. I had a 6 week recovery period (and lost a lot more weight), and then was scheduled for 7 more cycles of chemo. The good news from the surgery was that they got clean tissue margins, the pathology on the tumor itself was that it was 95% to a 100% dead, and that that infected lymph node was totally dead! As we got into a couple more cycles of chemo (which this period was to ensure that it was all gone), we decided that that was enough and to terminate any further treatment; here is what I originally wrote about that at that time:
We have decided that it’s time for me to stop my chemo. As many of you know I had surgery in May to remove my cancerous tumor; that surgery, because of all of your prayers, was a total success! We have been doing some follow up chemo since then — I’ve done two cycles since surgery (a total of nine cycles including the seven prior to surgery). Before we started the post-surgery chemos, the doctor told us that how many we decided to do was basically up to us (he said he expected to get through a few cycles). Given the side effects of the chemo, and the fact that the surgery was totally successful, and the fact the doctor said all of this follow up chemo might be for nothing; we decided (I kind’ve decided, and Angela is supporting me in this decision) that IT”S ENOUGH!
We are following up, now, with some major lifestyle changes; I am following an alkaline diet, taking some supplements to help my immune system to be highly bolstered, supplements to help alkaline my body, following some “alternative” protocols, and simply trusting the LORD to take care of us as He has thus far.
One more concern with “over-doing” chemo is that, as the doctor told us before we ever started, the chemo I’ve been on (besides the terrible side-effects it produces short-term) can produce other kinds of cancers in the future; and beyond that, the chemo can actually make my cancer resistent to future treatments — if over-done now.
We thank you all for the continued prayers and support. Now I will be in a period of recovery. My feet still have neuropathy, and will need some time to heal (please pray that that is a quick process). And please pray that I have years ahead of me on this earth, as the LORD tarries His return. I have a total peace from the LORD about all of this, and believe given the risk-benefit — relative to the chemo treatments — that this is the right timing to go ahead an move forward with life. (originally written June 5th, 2010)
I have been cancer free ever since! Tomorrow represents, I think my 6th or 7th post treatment CT scan, and they are always always nerve racking! So hopefully after reading the above (if you were able to make it through 🙂 ), lets you know why these CT scan days are so significant, and at points, scary for me (us). It is as if all of these past (not so far removed) memories just flood in, and the potential of that season breaking into our lives again rears its ugly head. I am confident that I am still cancer free, but we just appreciate your prayers that this is indeed the case. Thank you all!
I blogged through this whole season here.