I don't want to worry anyone, the title doesn't refer to cancer but to the blood clots I am still struggling with. After the clots in my arms had seemingly gone away, or at least diminished to the point where I was no longer aware of them (no pain or discomfort at all), they've come back with a vengeance.
About 10 days ago my left arm began showing signs of the clots again, raised hard veins just before my wrist. I showed them to the doctor at a schedule visit but he thought it was just scar tissue and the continued healing process and nothing to worry about. But over the next few days the raised veins got worse, and began to hurt a little. More troubling my hand began to swell up again, and I could no longer wear my wedding ring or carry heavy groceries in my left hand.
A few more days went by and the pain got significantly worse. Although I had no appointment I went to the doctor again and spoke with the head chemo nurse to see what she recommended. Not treatment wise, but which doctor I should even try to see. Should I stick with my Oncologist? Go to my GP? Or try to see a vascular specialist?
She told me to wait there and she'd get the Oncologist to take a look. It took a few hours before he had free time, but he did eventually come by to see me. I told him I felt like my veins were letting us all down, I didn't want to keep coming by his office but damn the pain was really getting bad. He could easily see the swelling in my hand and the hardened veins again in my forearm.
Concerned, he told me to go back to the blood thinning shots twice a day (not what my stomach, which was only now beginning to recover from weeks of twice a day shots, as I had only a week earlier been allowed to switch to once a day shots), to get an ultrasound on both arms, and that he would set up an appointment for me with a vascular specialist. This was last Monday (5/7), I should add.
On Tuesday I had the ultrasound on my arms. The right arm looked good, the clots were gone and the blood was flowing through the vein again. The walls of the veins were still thicker than usual, but not terribly so and seemed to be headed in the right direction for healing. But the left arm was still in bad shape. The clots had only cleared up about an inch from my elbow. After than inch, they were blocked all the way to my wrist. Thick vein walls and numerous clots could be seen, with no blood flow through those veins.
The following morning (Wednesday) I had the appointment with the vascular specialist whose office was in Bethesda. Julie and I arrived early and discussed all of the questions we'd like to ask, hoping to finally get answers to why I was having this problem with my veins, the treatment options, and (important to me at the time) pain management. I had brought a CD of the two ultrasounds I'd had on my arms, blood test results showing the possibility that I had the lupus inhibitor, and other medical records.
When we were taken back to the exam room I sat nervously waiting, wondering what tests would be run, questions asked. I had rehearsed in my head the narrative of the last few years of my diagnosis and treatments, trying to make it as comprehensive yet succinct enough for this initial exam. I shouldn't have bothered.
The doctor came in and he was a big fellow, full of energy and friendly confidence. I thought this was a good sign. After introductions he quickly moved on to wanting to see my arms, and confirmed what we already knew. He had of course spoken to my oncologist and knew the basics, but didn't seem interested at all in anything other than the last few weeks. What kind of chemo had I received? When had the chemo ended? What medications was I on?
"Oh it hasn't even been two weeks since chemo ended?" He said when I answered his questions. "This is nothing to worry about, it won't kill you and it will go away on its own. Avoid taking NSAIDs (advil, etc.) and otherwise go about your life as you normally would, no exercise or dietary restrictions.
"Well the pain is pretty bad" I explained, "and advil is the one drug that seems to help. Also, does it concern you, the way it does me, that my left arm had gotten better but has now flared up again?" Don't get me wrong, I wanted to believe he was right. But every doctor has first come to my case with a preconceived notion of how things would go. The way it has always gone in previous similar cases, but time after time my case has proven to be different, my body not reacting as the doctors anticipated. I was trying to be a good advocate for myself, as much as I wanted to believe this specialist.
The doctor considered my question for a moment, but then with a somewhat annoyed look shook his head and said "well the clots might not have really gone away the first time, just gone down a little before coming back. Two weeks is nothing, these things can take 8 weeks or more to clear up. It will go away." Then he added "in fact I think putting you on blood thinners was unnecessary, I understand why your doctor did it, but in your case it isn't what I would have done."
That really annoyed me, not because I wanted to stand up for my oncologist, but because this doctor clearly had not seen my earlier ultrasounds or read the reports. The swelling in my arms several weeks ago that put me in the hospital were no small problem, numerous ER doctors, hospital doctors, my GP and of course my oncologist had seen my arms and all thought blood thinners were needed immediately to stop this from becoming a life threatening emergency. I had brought all of that documentation and the ultrasounds with me to this appointment, and offered them up at that moment to the specialist, but he had no interest in reviewing them. After I insisted, I at least got him to review the blood work which had shown the possibility of the lupus inhibitor.
"You don't have the lupus inhibitor," he said confident in his opinion. "This is all because of the chemo, it does crazy things to you and will take a while to work it's way out of your body. In a few months your arms will be better and you'll get back to normal."
Again I wanted to believe him, I wanted to say "Ok, great" and walk out. But I've been down this road so many times now having done just that, only to be back in the doctors office a few months later to hear why a condition that should have been cured had somehow come back.
"Here's the thing, I don't know when I feel certain pains and lumps on other pars of my body if they are just bruises (I bruise easily now on blood thinners) or if they are clots. For instance I had one come up on the back of my thigh this week."
He had me drop my pants and I turned around for him to review it. He rubbed a finger on the spot just above the back of my knee and said "that's a clot, it's running right through a vein." This seemed to throw him. The clots had always been in my arms where the IVs had been placed and the drugs entered my body. But here was a clot far away from that spot, and it was clear he didn't expect this. But he said no more.
"What should I do about that clot?" I asked.
"I'd have your Oncologist look at that one" he said, making it clear to me the appointment was over.
So I put my pants back on and he again said "you'll be fine in a few months, but call me next week and let me know how things are going. As we left we could hear him on the phone with the oncologist, but didn't stick around to eavesdrop. I was annoyed, feeling like he couldn't get us out of there fast enough and that we had wasted our time that morning.
"I'm with a vascular specialist to review my blood clots," I began to complain to Julie as we left the building, "I show him a new clot on my leg, and he tells me to make an appointment with my oncologist?"
I was angry, and I suppose I could have pushed the specialist further, but basically I was through with that guy and knew I'd have to find a new one if I wanted another opinion. But on the flip side I wanted the guy to be right, that this really wasn't anything to worry about and that it would go away on its own. Also, I was in a great deal of pain, the swelling was at its worst that morning and I could hardly bear it. Julie went to work and I went home, where I caved in and took a narcotic pill for the first time since I had quit them after the earlier blood clot experience. I also wrapped my arm in a heating blanked and then laid down on the couch, wondering what the hell was wrong with my body.
I ended up taking more narcotic pills for the pain that night and not doing much. My arm wasn't much better on Thursday but I got up and went for a run with Julie and Bica anyway. We had run each morning that week, although just two miles each day. I needed to get my endurance back up, and with each run my legs and lungs were getting stronger, albeit slowly. I was determined not to fall back on the crutch of narcotics which took the edge off of the pain, but made me sleepy and lethargic, also somewhat depressed. Despite the doctors warning I decided to stick with advil, but tried to only take it once in the morning and once at night. I should note that when I pressed him about that, about how advil offered me the most relief from pain, he did say it was ok to take it just not around the clock.
I also kept the arm wrapped in the heating pad for hours at a time, over my head, which seemed to help quite a bit with the pain while it was heated. But when I would remove the pad the pain would be even worse for about 15 minutes or so, before leveling off becoming tolerable again.
Friday morning my hand looked better. Still swollen but less like a balloon. The veins in my wrist were still hard and painful, but things did appear to be moving in the right direction. Hoping this doctor was right I also switched back to once a day blood thinning shots. My stomach just couldn't take twice a day any longer. Huge black & blue bruises now covered my abdomen, and scar tissue lumps were everywhere. Finding a place for a shot was getting harder and harder, my gut needed a break. I was taking a chance here that the specialist was right and that at this point blood thinners were not as necessary as before. I spent more time walking and that seemed to help the small clot in my leg too.
In fact on Friday Bica and I took a 3-4 mile walk together and although my hand was hurting, it seemed to do a lot of good for the leg clot. I also found several small clots in the tops of my feet, but so far all of these like the clots in my arms were in surface (called "superficial") veins. These are rarely dangerous, and certain while I was on blood thinners, even a reduced dosage, should not be an issue.
Later on Friday we drove out to the beach and that night my arm again began to hurt very much. I kept the heating pad on it for hours and took advil, by the morning my had again seemed better. The rest of the weekend passed that same way, painful in the morning and at night until heat and advil helped to bring it under control.
That's really where things stand. On Monday we extended our morning run by a mile, the first time I'd gone farther than 2 miles in almost 3 months. I also did an hour on the elliptical later that afternoon. Heavy rain this morning kept me from running, but I plan to hit the gym and to try another hour on the elliptical. The low impact on my body, but working out both arms and legs seems to be helping. Long, hot baths and the heating pad offer a good amount of relief to my arm which looks better with each passing day. The hand is still swollen, but looks much better than this time last week. The clot in my thigh and the small ones in my feet are almost completely gone.
So perhaps the specialist was right after all. That's reassuring, but also tells me I may have further relapses with these clots in my arms before all is said and done. It just goes to show how long chemo stays with you, and the crazy things it does to your body. As I talked to one of the other guys recieving the same BEP treatment I was getting we discussed some of the few pros of going through chemo. He'd had a few warts on his hands which had fallen off after his 5th week of treatment. I had suffered from annoying and sometimes painful dermatitis since going through radiation last year, but once chemo started that had cleared up and it hasn't come back yet. If you're going to have to suffer so much through chemo, you might as well get a few side benefits (besides curing your cancer, we hope).
Tuesday, May 1, 2012
I'm done with chemo.
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.