Five Years -- Blog Retirement (fingers crossed)

Been years since I've posted, almost did at year two of my remission but xkcd did it better than I ever could, so I let it go.

Had my five year CT scan a few months ago, cancer is still in remission and that means surveillance is now tabled.  No more annual CT scans.  That may not sound like a big deal, but it is to me.  These tests caused anxiety and depression, as well as flooding me with the unhappier memories of my cancer years.  The CT scans were not fun at all.

I'll still have some tests with my annual physical, but the big anxiety producing test is over for now.  Of course I'm not saying I'm absolutely cured, or that I'll never have cancer again.  But I'm in remission now and that is as good as things can ever be.  Overall my life is and has been very good.  That includes the years before, during, and after cancer.

So this is goodbye, for now, from this blog.

One Year

It is hard for me to believe but it has been one year since I finished my initial recuperation from chemo and returned to work.  In fact last Friday, on 6/7/13, I had my one year CT scan (spoiler alert:  no sign of cancer).  I didn't get the official results until Tuesday night, but when I didn't get a call from the doctor on Friday or Monday I figured the scan was good.

This is the first time since my initial diagnosis on 6/8/2010 that I've gone 12 months without a relapse.  My doctors all told me BEP chemo would be curative, but it's hard to take their word for it when cancer kept coming back from other supposedly curative treatments.  The doc called Tuesday night to tell me the good news, and I went into his office on Wednesday to have my blood tested.  No word on the blood tests yet, but my cancer has never showed up in my blood so I don't have any real fears about blood-work like I do CT scans.

I'm now on a 6 month CT scan schedule for a couple of years, so I have another one of these anxiety fits in December.

Switching gears here the search function on the blog and google says I haven't written about this next part before, although I thought I had.  If this is a repeat, skip it.  Also, bad words coming up.

As I mentioned I was initially diagnosed on 6/8/2010, but knew it was likely cancer for several weeks before that.  As soon as I felt the lump on my testicle I started searching online, of course.  The urology office I ended up going to had some info on their website (which I'm too lazy to look up) but they had a stat there that said something like "a lump on the testicle is cancerous 93% of the time."

I'd noticed the lump sometime in April, waited a week or so before telling Julie, and then in early May called the Urologists office to schedule an appointment.  For lots of reasons not worth going into, it made sense to wait until June for the appointment.  

God it takes me forever to tell a story.  I'd be yelling at my wife if she were telling it this way.  Anyway, on 6/8/10 when I went to work, Julie was home really sick.  Like flu/cold sick.  I had my appointment with the doctor in the late morning, and although sick Julie did say "good luck at the doctors."  I had not told her of my research, so Julie really didn't think this would be anything major.

When I saw the doctor for the the first time we hit it off immediately.  So the doc and I are talking men's fashion, sports, etc.  Finally he asks why I'm there, I explain the lump, he has me drop my pants, and then says something like "this is the worst dude to dude news that there is, but I'm almost 100% that's cancer."

He tells me some reassuring things (curable, tough road ahead but you'll survive, etc.) and then has to leave the room to start setting up appointments for me that day to have tests run to confirm his diagnosis.  

So I yank out my cell and call Julie's.  Voicemail. 

I dial her cell again.  Voicemail.

I call our home phone (remember Julie's sick in bed, about 11 am right now).  We have one of those old style answering machines where you can hear the person leaving a message if you are in the house.  

Home phone goes to voicemail, and I leave the following message:  "ANSWER THE FUCKING PHONE!"

I call her cell phone again.  An annoyed, sleepy voice answers "wwhhaattt?  I'm sick and trying to sleep"

Slight digression:  Thank god you can't reach through the phone and slap someone.

I tell Julie, in my own annoyed, slightly panicking voice "I have cancer."

It went on a bit from there because what I said didn't penetrate her sickness for a few seconds, but when it did sink in Julie's protective mother-bear instincts took over and it was all I could do to stop her from hanging up and booking me a room at Sloan-Kettering.

But the point of my reliving that story, which I've probably told 1,000 times, is that I kept that "ANSWER THE FUCKING PHONE!" message on the answering machine for the last three years.  I would play it occasionally, sometimes in jest, sometimes when I was feeling down, when I had my relapse(s), when we had guests over and I'd had too much to drink, etc.

Folks I deleted the message.  

Funny as it was (reading it doesn't do it justice, it was like I spelled out every syllable and spoke as slowly and sternly as possible; like a parent in a public setting trying to express to their misbehaving child shit is about to get real), it was also something of a... crutch?  bad luck charm?  Not sure what to call it or why it went from funny to sad for me, but it did.  I just knew it was time to delete the message and let it go.  I should also note I deleted it a little while ago, not after this most recent CT scan, so that wasn't the trigger.  I just kept meaning to write about it and (as far as I can tell) never did.

Cancer may or may not be out of my life forever, I know deleting the message won't have any impact on that.  But I also can't continue to live the past.  Cancer will certainly be part of my life going forward, there will always be the before cancer years and the after cancer years.  And I'm not shy about cancer, I'll talk about it with anyone who is interested and will probably think about it every day for the rest of my life.

I don't know why that message, which I honestly thought I might have forever.  If I could have figured out how to make that my ringtone I probably would have done it*. But strange as this might sound that message started to feel oppressive to me.   

*actually I just now had this thought and I'm kicking myself a little for not thinking of it BEFORE I deleted that message.  That might have been the worlds greatest ringtone, which instead is held by my wife.  Her ringtone is a recording I made which repeats over and over "Julie, this is your phone.  Julie this is your phone, ANSWER ME!"  She's a lucky lady.

A Belated Apology, or, The Post in Which Tony Shows What an Ass He Can Be

A long overdue update, which I'm not feeling very inspired to write so this one will probably be pretty mundane.  I'll start with my best story, if you don't like this one the rest of this post will only get worse.

Months ago, during treatment, I was a few days out of the hospital for the blood clots in my arms.  If you go back & read the posts from that period you'll see that I was in a great deal of pain, and we were all pretty worried.  There was so much confusion, some doctors calling this potentially life threatening (if the clot should break off and cause an aneurysm), others saying I probably didn't need to be on blood thinners.

So Julie and I were at home, I was laying on the couch (about all I ever did during the chemo months, it seems like) and Julie is sitting next to me.  I'm complaining about my arms hurting so much and then I (I feel like an ass all over again as I'm about to write this) I pretended to have a heart attack/aneurysm.  I know how that sounds, terrible, right?  It was over in a second.  A quick grabbing of my chest and pained look on my face, dramatically closing my eyes, a croaking sound from my voice, a second of pretending I wasn't breathing.

Then I opened my eyes and starting laughing.  Well for a half-second, anyway, until I noticed Julie's ashen white face.  I neglected to consider (a common complaint from those I love) how much stress she was under, and how worried she had been.  What I thought was an obvious prank had seemed all too real to her.  We've laughed about it (a little bit) since then, but she needed about 15 minutes alone after it happened; probably to stop herself from finishing the job.  So a public apology, Julie deserved (and probably continues to deserve) better.

In other recent news:  I had my follow up blood test related to the blood clots and the disease I had tested positive for (lupus inhibitor) while on blood thinners.  There was a good chance it was a false positive because of the blood thinners, and that ended up being the case.  I am lupus inhibitor free, that is, I have no permanent blood clot disorder.

Now that I'm several months post-chemo (almost six months, if you can believe it) things have pretty much stabilized.  I'm still dealing with the hands & feet issues (slightly swollen, so rings don't fit and shoes feel tight), morning fatigue, and off and on mild depression.  I've only mentioned the depression once or twice on this blog, but as the physical ills fade away, depression is more noticeable to me.  I don't think it is worse, maybe better, and it certainly isn't all the time.  But it is present more often than I'd like, and it is something that I haven't ever really had to deal with, at least not in any meaningful way.  We went on vacation in Montreal this year and I had a particularly tough time for a few of days there.  Actually the days were great, but at night I would shut down emotionally.  It's hard to describe, but it made for a few trying days in what should have been a relaxing time.  

Perhaps part of my depression (if that's the right word) is my continued itchiness.  The itchiness began more than a year ago during radiation treatment, and actually faded during chemo.  I had hoped chemo had cured that issue, but instead it slowly came back, and is now worse than ever.  I've seen the dermatologist several times, but I think it's time to get a new one.  I'm not sure she and I are connecting on this problem, and her solutions either are not doing enough, or are so debilitating (mostly through drugs causing severe fatigue) that the treatment is worse than the problem.

Julie kept pushing me to go to acupuncture, and I finally did a week ago.  I've been three times, and it is very relaxing, but no itch relief yet.  I have another appointment on Friday, and will have to decide if I want to continue with those sessions or not.

The day we came back from Montreal we bought a Jeep.  We'd been thinking about it for a few months, and just went to the dealership and bought one.  That makes it sound spur of the moment, and it really wasn't.  Part of the thinking about it included research on Jeeps, contacting dealers for quotes on their current inventory, etc.  So we knew this specific jeep could be the one if we liked the way it drove and if they'd come down to a certain price.  Both criteria were met, and we bought it and drove it out to the beach immediately.

We'd been car-free for more than 8 years, but the Jeep is fun to drive and has really opened up a lot of the surrounding area.  And of course we're not so much into making ourselves wait to have fun any-longer, within reason.  As I've mentioned several times on this blog Julie and I have had a great life together, the happiest 10 years of my life.  But we were also careful planners and rarely blew money on purchases without thinking about them for a while.  We haven't exactly gone the other way on this, but when we both want to do something we tend not to hold ourselves back any longer.  More of a slight shift than a major life change.

The jeep, while so much fun to drive, is gigantic.  It's a 4 door wrangler with a hard top and huge tires (at least to a guy who has only owned a 1974 VW bug and 1992 Mazda 323).  It looks like this one (I hope that link is still good for a while).  The hardtop was the only thing we didn't love, I really wanted a soft top so we could take it off more often.  Since we don't have any place to store the full hard top (it comes off in three pieces), we can only remove easily the panels from the front seat passengers, which we do all the time.  Those fit in the trunk.  We'll see how the winter goes, but I suspect we will eventually get a storage unit for the hardtop and use a soft top, or sell the hard top and buy a soft top.  But again, a cold winter might make us grateful to have the top that we have.

Not long after buying the jeep, I was invited to a food & wine dinner by my urologist.  You might recall he saved the day for me when I was headed it Indy to see Dr. Einhorn, the specialist who discovered/developed the chemo treatment I received.  My urologist is a member of a wine & food society and invited me to become a member.  The dinner was a lot of fun, got to meet some other friends of my urologist as well as several other members.  I need to attend a few more dinners before I can become a member, which I expect would happen at the start of 2013.

Things are going well otherwise, and I don't expect to have much in the way of updates for a while, but of course you never know.  My next scheduled drs appointment is for mid-January.

My Dinner with Constantine

At the start of my second round of chemo (week 4 of total chemo series) A man about my age came into the communal chemo room with my oncologist to begin treatment.  This was a Monday, and I had already received my benedryl drip so I was pretty out of it.  But a few hours later when I came to I discovered that this guy was just beginning the same treatment I was receiving for testicular cancer.

We made our introductions and then saw each other (and our wives saw each other) just about every day for the next 2 months.  During our initial introductions my wife and I misunderstood his name and thought it was Constantine, and since I didn't ask his permission to use his name on this blog I'll stick with that here.  He and I went through some tough times together.  Most notably for me was the DVT issues that put me in the hospital as I neared the end of my treatment, and for Constantine it was developing appendicitis while undergoing chemo.  We both think the other had it worse.

We've kept in touch via email as things progressed post-chemo, and this past Thursday we all (Constantine, his wife, Julie & I) went out to eat together.  We had not known each other socially at all, only medicinally (if that's a word I can use that way), but we had a wonderful time (as well as too much to drink on a work night).

I found out that Constantine and his family referred to me as "The Mentor" and we had a lot of laughs about Julie & I thinking his name was Constantine.  We were able to swap post-chemo notes  and we've both suffered from the same symptoms, except for the man boob pain.  Constantine was happy to note that he was not suffering from that nor did he need to have a mammogram.

It was really an incredibly enjoyable evening, and just fantastic to see someone back in good health who I had watched slowly drift into sickness before my eyes.  It really drove home what it must have been like for Julie to watch me go from a healthy, active (youngish) man into the sickly sight I became, as I had to watch the same effect in Constantine.

Conversely I was able to see that once pale, chemo sick man now smiling, healthy, and again enjoying food and drink; just as my family has been able to see that happy return to health in me.

It was a really enjoyable evening, and I hope Constantine and I continue to have a friendship going forward.  Julie and I are not always the best about maintaining relationships with our friends, but I really don't want to let this new found friendship drift away.

Man Boobs

Will the fun never end?  I'm not sure I've spelled this out completely so I want to make sure you all understand something before I continue:  I am a man.  I was born a male and I'm still a male.  I was diagnosed with testicular cancer in June of 2010 and have had various surgeries and treatments for this disease, but none of this changes the fact that I am a man.

People, today I had a mammogram and a sonogram.

About a month after chemo ended and I started to feel a lot more like myself, I also started to experience numerous small pains and issues.  The worst of these which I've had for going on 2 months is a pins & needles like pain in the bottoms of my feet (heels mostly) including numbness.  But rather than catalog them all just take my word for it, I've got lots of pains and discomforts which are going to last a while.

This is probably a good time to give a nod to the good folks at TC-Cancer.com, specifically the support forums over there.  I never posted, but lurked in the forums often to see if others had experienced any of the same crazy symptoms I've had (or continue to have) throughout my cancer treatment.  This was (and continues to be) an invaluable source for me, and I suspect for most men who have had testicular cancer.

Anyway, I won't catalog all of my issues today but I'll tell you about the one that developed about two weeks ago.  My left breast, just under the nipple, started feeling sore.  Mostly to the touch, I'd notice it when Julie would put her head on my chest as we laid down to go to sleep.  A few days of soreness and I was able to feel a lump/bump under the nipple.  Pain, lumps, and bumps are the kind of thing that make a cancer survivor turn pale with fear.

So off to the internet I went searching the forums at TC-Cancer.com and sure enough several post-chemo patients had experienced the same thing.  Most seemed to think (or their doctors seemed to think) it was related to low testosterone and a symptom of Gynecomastia (look it up folks, then shake your head with pity for me) and that it would get worse, clear up on its own, or require a testosterone gel.

Well I was hoping it would get better, but after a week or so it was still bothering me so I called my oncologist but there were not appointments available for a few weeks, so instead I made an appointment with my general practitioner.   That appointment was this afternoon and I went through the catalog of pains with him (the ones I'm sparing you from having to hear about) and he wasn't worried about any of them (his diagnosis matched that of the folks who had experienced similar issues and wrote into the forums at TC-Cancer.com which was comforting, also I'll stop plugging the site now) except the pain in my breast.  And that's when he told me "I'm sorry to say this, but you'll have to get a mammogram.

There is a breast-radiology office in the same building as my GP, so I went down there with my order and entered a waiting room filled with women, then walked up to the counter and announced to the check in nurse that I needed to have a mammogram (please see the first paragraph).  Not much later I was in a small, private waiting room wearing my suit pants and an open-in-the-front medical gown.

The nurse giving me the mammogram was very nice, the mammogram on the other hand was not.  I could use more muscle in my chest, no doubt, but I do not have boobs so she really had to work to get what I do have into the pancake flattening machine.  Two images for each boob (even though the right wasn't hurting, they looked at both), squeezing from the top & bottom first, then side to side.

After that I had a sonogram on the left breast by the doctor, which only took seconds before the doc told me I was fine and it was nothing to worry about, just some kind of tissue build up that was of zero concern.  Julie was in the waiting room when I came out, I didn't have her come to this appointment (not expecting much to happen) but texted her when the word "mammogram" was first mentioned.

Back to my GP we went, relieved obviously, where my GP told me I almost certainly did not have Gynecomastia (if you didn't look it up yet, that's "man boobs").  Nonetheless he took some blood to check my testosterone levels as well as my thyroid.

So there you have it, another crazy, humiliating, and yet somehow comforting day in the life of a testicular cancer survivor.

Hi-Ho

My follow up CT scan on Monday showed the tumor was gone, so it's back to work for me tomorrow.

I didn't sleep well Sunday night so I was exhausted Monday morning.  We slept past the alarm, so when I finally got up at almost 8 am I had to shower quickly, fill up a thermos with coffee, packed a few small items for breakfast and got on the bus headed to Sibley Hospital where the CT scan was taking place.

I didn't get barium ahead of time so I had to be at the hospital by 9:30 (an hour long bus ride) to drink the barium, then I'd have a 2 hour wait before the test at 11:30 am.  I made it to the hospital, quickly drank the barium, then headed outside to have my coffee and breakfast sitting on a bench on a very pleasant day.  I was nervous and exhausted, but the coffee helped a little and I sat outside reading for a few hours.  Julie met up with me just before 11 am, she'd had to stay behind for a while to take care of Bica.  About 11:15 we went back inside to wait for my name to be called.

They were running behind so it was 12:30 before I was called back.  I got another barium to drink while they pricked my finger to test kidney function, then put in a IV line for the contrast.  Passed the kidney test and finished the barium, the tech took me back to the scanned and performed the test.  

I was nervous, almost shaking nervous.  I was worried that when I had to lie still and hold my breath that my knees were knocking (I really don't know if it was in my head or they were actually moving), but since the scan was of my pelvis and abdomen I guess I was still enough where I needed to be.  The entire process was over in a matter of minutes.

Julie and I took the bus back home where we had lunch then napped for a while.  Just before 5 pm I called the doctor to see if he had received and reviewed the results, and that's when I got the good news.  No details but he said the results showed exactly what we wanted and he couldn't be more delighted with the outcome.  Julie and I breathed a big sigh of relief, made dinner, and went to be early.

I wish I could say we woke up bright and early and went for a run; instead we again slept past the alarm and didn't get out of bed until around 8.  I have been craving peach pie and had bought peaches over the weekend.  So I got up and started on the pie, first making the crust in the mixer while pealing the peaches and creating the filling.  Took me a while, but the pie went in the oven about 9:15 and is out cooling now.  I suspect Julie will come home at lunch to have a slice with me.

My next appointment with the doctor will be for sometime in mid-August.  I have another month of these lovenox blood thinning shots and then I get to stop on July 12th.  4 to 6 weeks later (not getting blood thinners) I have to get a blood test to find out if I do in fact have that blood thinning disease, the Lupus Inhibitor.  So I'll see the doctor at that time.

I'm much better now overall.  I still have blood clot issues but they're no longer severe or painful.  My hands and feet still swell and have circulation issues as well, very annoying but I hope this will go away over time.  I have occasional bouts with depression, these never last more than a day at a time but this is new to me.  I have to think that getting back to a normal schedule and working will help with this.  It had been getting a little worse at the beginning of June so I picked a big project to give my days some structure:  I pained the living room, kitchen, and entryway (all kind of one big room).  It was probably too big a job for me, especially with the swelling in my hands and feet.  I started when Julie was out of town and then we finished it this past weekend.  Probably too big a job, as I said, but now that it's done I'm so glad I did it.  The place looks fantastic, we had so many cracks in the walls from the building settling (we bought our condo new from the builder) and I always hated seeing those things.  I got much better at filling cracks and took my time with the work, letting the plaster dry overnight before sanding and re-applying where necessary.  In fact the first several days were spent doing the crack repair, cleaning the walls and baseboards, and taping off all of the areas not being painted (ceiling, window sills, floors, etc...).  It was slow, miserable work.  I downloaded numerous books on tape from the public library and listened to them hour after hour, day after day.  Many of them were stories I was familiar with but had never read (Treasure Island, Tarzan of the Apes, The Strange Case of Dr Jekyll & Mr Hyde), and I also started on a series I'd always been interested in but could never get myself to start, the Master & Commander books.  I listened to the first three of those, and I've since read the fourth.  I don't know that I'll make it through all twenty or so anytime soon, but they're very fun books so far.  Both Tarzan and Treasure Island were also excellent, very fun adventure stories that were both darker and more humorous that the TV/Movie versions I'd seen as a kid.  Both were more adult than I expected as well.  Jekyll & Hyde was good, but not as good as I'd expected, a case where I might like the movie version better than the book.

Well after that literary digression, my main point was that the painting & books on tape seemed to combat my depression and that otherwise I'm through with cancer, I hope forever.  Both my primary oncologist and the specialist in Indiana say I'm cured forever, but I have to admit I'm more cautiously optimistic.  I feel like I've heard this all before a few times now, but I definitely want to believe it's finally, really true.

Relapse

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).