This past Friday, 4/27/2012 was my last chemo treatment. It wasn't supposed to be, I should have received bleo yesterday, and I should still have one additional bleo treatment this coming Monday. But the good doctor in Indianapolis, Dr. Einhorn, made this change to my treatment schedule after learning from my primary oncologist that I had been sidelined with deep vein thrombosis in both forearms.
I first found on on Wednesday of last week, in the middle of my final big chemo week (hell week #3) that I might be finishing on Friday. During treatment my doctor came by and asked me to see him before I left for the day. Around 2 pm I was on my final bag of post-chemo hydration taking a well deserved bathroom break when I saw the doctor alone in his office. I asked if now was a good time and he had me come in and gave me a series of "good news/bad news" reports.
First up was some good news. My blood tests from a few weeks ago were negative for any genetic blood clotting issues. "Whew!" I thought, thank god I don't have any lifelong blood clotting issues!
Not so fast, came the bad news. I did test positive for something called the Lupus Inhibitor which is basically a blood coagulant disease. That is I'm potentially going to be on blood thinners for the rest of my life, and I'll certainly have to take extra precautions with blood clots (travel, for instance) that others don't have to worry about.
But wait, maybe all is not lost: This test could have been a false positive because I was on blood thinners at the time of the test.
Wait, I probably do have it: the blood thinner I'm on is not one that normally produces a false positive.
The final outcome: I have to stay on the blood thinning shots I have been taking for 3 months which should be curative for the condition that sent me to the hospital overnight. After 3 months I can go off the blood thinners and get tested again to see if I test positive for the lupus inhibitor again, or if the earlier test was a false positive.
So not the news I wanted, but I could live with it. The shots twice a day in the belly are pretty miserable, but only for 1-2 minutes after which I forget about them until the next one. Well except when I look at my stomach which looks like I've been hit by a 2x4 in a bar fight. My gut is badly bruised from the shots on both sides of my belly button.
But this wasn't even the big news from the meeting. My doctor then tells me that he emailed Dr. Einhorn about my condition and Einhorn's response had been provocative. "Let me email it to you" said my doc, which is what he did without further explanation. So back to my chair I went to check my phone to see what Einhorn had said about me.
Einhorn, you may recall, is the world's leading expert on testicular cancer who pioneered this treatment decades ago. Almost overnight Dr. Einhorn changed the survival rate from testicular cancer which was nearly always fatal, making it nearly always curable. Dr. Einhorn is also the one who told Julie and I that I did not have a dark cloud hanging over me, and that this chemo treatment was going to cure me.
So the first line of Dr. Einhorn's email to my doctor, when he found out about the blood clots in my arms was "This poor guy can't catch a break." That pretty much summarizes the way Julie and I (and my family I'm sure too) have been feeling the last several years. Dr. Einhorn's recommendation was that since there were not any guidelines for the path I'm on at this point, to discontinue the bleo treatments and simply finish out the Etoposide and Cisplatin therapy. Well at this point I was three days into my final 5 EP treatments. So I read that email sitting in my chair thinking "holy shit, I might have just two days of chemo left."
That put a big smile on my face and I quickly forwarded the email to Julie. But almost immediately after sending I reread the email and probably read more deeply into than Einhorn intended. But the "poor guy can't catch a break" and the "there are no guidelines for this" and his ending line in particular "hopefully the follow up ct scan will show the cancer is gone" made me wonder, and worry, if there was a dark could hanging over me.
I don't think Einhorn intended it this way, I know I was reading more into it than I should have. But since I was diagnosed in 2010 by my Urologist every doctor has told me "yeah this sucks, but this is the cancer to get. Slow growing, caught early, you're going to be cured."
Well one surgery, one biopsy, two separate chemo regimens, and a round of radiation later I'm still waiting to be cured.
Anyway back to my story. Julie and I were of course excited that chemo might be over and I did my best to make it through the rest of the week not knowing for sure. Thursday and Friday were rough days, very nauseated and tired. Saturday, usually my big day for rest, I had to go to a wedding in Arlington. It took all I had in me to make it to the wedding. First time in two months I'd worn my contacts, put on a suit and tie, etc. We skipped the reception of course, our usual drinking and dancing wedding routine was sidelined. But this was a good friend and something I had to do. It just made Saturday a much more difficult day that normal, when I might have slept the entire day away. Saturday I also received the final white blood boosting shot from Julie, and worried my Sunday would be spent with deep bone pain as it had been with the last one.
Sunday I was determined to make the best of a pretty day, and the end of my final hell week of chemo. I was sore from that shot Julie had given me, but not in real pain like I had been a few weeks earlier so I managed the pain with OTC medicine. Even if I had two more weeks of Bleo (and at this point I assumed I was finished) I wasn't going to wear glasses everyday, nor put on those same jeans and flannel shirts. Side note: I wore the same pair of jeans (washed periodically by Julie) to every treatment. I did this on purpose, telling Julie I was throwing them away the day chemo was over. Jules convinced me to at least donate the jeans to charity since they were in good shape, even if I never wanted to wear them again. But true to my word I wore them for Friday treatment and that's it, never again.
Back to Sunday: Julie's mom had arrived in town the previous Tuesday morning. So Julie and her mom went to the grocery store on Sunday while I took the dog for a walk. When they got back we had decided to make a big sunday meal to last part of the week. Our famous veggie lasagna with meatballs & sauce. While Julie and her mom worked on cutting and roasting veggies, I went to work on the meatballs and sauce. Hours later I started on the pasta (from scratch, this is really a fantastic meal) and Julie began layering the lasagna. By 3 pm the lasagna was in the oven and I was done. I'd already napped once that morning, but I napped two more times before going to bed at night.
The lasagna was amazing, the best we'd made to date although it's always good. My sauce was excellent as well, although the meatballs were not dense enough for my tastes. Still tasted good, but not my best work. Anyway that was my first big real meal in months and it sent me right to bed feeling both good and miserable at the same time.
Monday morning my sore muscles were greatly improved, and I was all nerves. I think everyone was as it was the day to find out if treatment was over or would continue for a few more weeks. I put on a linen suit (remember, no more jeans for this cancer patient) and Julie and I took the bus to the doctors office. I was giddy, but knew I might be in for some disappointment depending on the news from the doctor. I had my vitals taken and Julie and I waited in an exam room for the doctor to arrive.
Dr. Fishman stopped by shortly thereafter to see how things were going, and then began to inspect my arms where he was very pleased with the progress. "These look perfect, normal arms again" and then a quick exam of listening to my lungs/breathing, checking limbs, etc. Finally he said "I got another email from Dr. Einhorn, let me go check my email and I'll be right back."
So Jules and I waited, wondering what the news would be. Back when Einhorn first recommended that the bleo treatments end he had not yet received the results of my blood work re: lupus inhibitor, which I described above.
Dr. Fishman came back with a printout of the email in which Dr. Fishman had told Dr. Einhorn of the results of my blood work and asked if his recommendation was still that I discontinue the bleo treatments. Dr. Einhorn's reply was bolded and in a large font: "Yes, discontinue bleo treatments."
So that was that. My last day of chemo had already come and gone. Relief flooded both Julie and I, and really the next hour or so passed as if a dream. I was teary eyed and thanking everyone in sight. I went back to the treatment room to tell the nurses who I'd spend the last two months with that I was done, they did their last day celebration of blowing bubbles on me. Lots of hugs and happy talk later, Julie and I got a new Rx for the blood thinner shots (same drug, bigger dose, but just one shot a day!) said goodbye to the dr, nurses, and other office staff and then headed downstairs. I shot a few text messages to family while Julie called her mom to come meet us for breakfast in Georgetown.
After way too much food at Kafe Leopold (on my still chemo-queasy stomach) Julie went to work, her mom went shopping, and I went home. I called my dad to tell him the news, then soaked in the bath for a while, sobbing with joy & relief several times. After that I fell asleep for a few hours.
So that's it. Chemo is over and I should be cured (again). I see the doctor in early June to schedule that follow up CT scan to confirm, which will be about the scariest thing in the world. I'm still out on disability right now, I expect to be for another month or so as my body heals and adjusts to life without chemo. But with any luck in early June I'll be sleeping normally (and not all day), my appetite will have improved, and my body will be stronger through daily exercise (first run in weeks this morning... it was painful, slow, short, and hard). And most importantly, that follow up CT scan will show the cancer is gone, this time for good.
I'll leave you with a photo of me and the bubble blowing nurses who took such good care of me for the last two months.