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).