tag:blogger.com,1999:blog-47585048828548657702024-03-13T12:39:25.284-04:00Lighter on the Left SideColumbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-4758504882854865770.post-33707249649043685822017-04-22T20:01:00.002-04:002017-04-22T20:03:29.357-04:00Five Years -- Blog Retirement (fingers crossed)Been years since I've posted, almost did at year two of my remission but <a href="https://xkcd.com/1141/" target="_blank">xkcd</a> did it better than I ever could, so I let it go.<br />
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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.<br />
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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.<br />
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So this is goodbye, for now, from this blog.<br />
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<br />Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-58412326668167463442013-06-15T08:05:00.001-04:002013-06-15T08:05:18.424-04:00One YearIt 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.<div>
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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.</div>
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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.</div>
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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.</div>
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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."</div>
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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. </div>
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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.</div>
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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."</div>
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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. </div>
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So I yank out my cell and call Julie's. Voicemail. </div>
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I dial her cell again. Voicemail.</div>
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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. </div>
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Home phone goes to voicemail, and I leave the following message: "ANSWER THE FUCKING PHONE!"</div>
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I call her cell phone again. An annoyed, sleepy voice answers "wwhhaattt? I'm sick and trying to sleep"</div>
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Slight digression: Thank god you can't reach through the phone and slap someone.</div>
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I tell Julie, in my own annoyed, slightly panicking voice "I have cancer."</div>
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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.</div>
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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.</div>
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Folks I deleted the message. </div>
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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.</div>
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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.</div>
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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. </div>
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*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.</div>
Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com2tag:blogger.com,1999:blog-4758504882854865770.post-21382567196949158002012-09-25T19:14:00.001-04:002012-09-25T19:14:52.949-04:00A Belated Apology, or, The Post in Which Tony Shows What an Ass He Can Be<div>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.<div> <br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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. </div> <div><br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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.</div> <div><br></div><div>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 <a href="http://www.google.com/imgres?um=1&hl=en&safe=off&biw=1171&bih=834&tbm=isch&tbnid=FDj3Rb7I5Pa4QM:&imgrefurl=http://cars.oodle.com/view/2009-jeep-wrangler-unlimited-sahara-hard-top-trailrated-4x4-1-owner/2668127605-fond-du-lac-wi/&docid=A8EnTzD40DnFTM&imgurl=http://i.oodleimg.com/item/2668127605u_1x424x360f_2009_jeep_wrangler/%253F1323843509&w=424&h=360&ei=0d5hUKXWOsW70AG5ioCACw&zoom=1&iact=hc&vpx=886&vpy=480&dur=1897&hovh=207&hovw=244&tx=124&ty=128&sig=108050540352208182105&page=1&tbnh=149&tbnw=172&start=0&ndsp=20&ved=1t:429,r:19,s:0,i:131" target="_blank">this one</a> (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.</div> <div><br></div><div>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 <a href="http://www.iwfs.org/" target="_blank">wine & food society</a> 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.</div> <div><br></div><div>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.</div> </div><div><span></span></div>Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-747344195725928092012-08-01T18:38:00.002-04:002012-08-01T18:38:41.647-04:00My Dinner with ConstantineAt 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.<br />
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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. <br />
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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). <br />
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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.<br />
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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.<br />
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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.<br />
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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.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com2tag:blogger.com,1999:blog-4758504882854865770.post-37486324712628093202012-07-11T19:01:00.000-04:002012-07-11T19:01:13.924-04:00Man BoobsWill 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.<br />
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People, today I had a mammogram and a sonogram.<br />
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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.<br />
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This is probably a good time to give a nod to the good folks at TC-Cancer.com, specifically <a href="http://www.tc-cancer.com/forum/index.php" target="_blank">the support forums over there</a>. 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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So there you have it, another crazy, humiliating, and yet somehow comforting day in the life of a testicular cancer survivor.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com4tag:blogger.com,1999:blog-4758504882854865770.post-14824565798582709892012-06-12T11:20:00.002-04:002012-06-12T11:28:19.830-04:00Hi-HoMy follow up CT scan on Monday showed the tumor was gone, so it's back to work for me tomorrow.<br />
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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.</div>
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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.</div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-22120798680963449322012-05-15T10:22:00.000-04:002012-05-15T10:22:44.187-04:00RelapseI 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.<br />
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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.<br />
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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?<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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?<br />
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"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.<br />
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"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.<br />
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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."<br />
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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.<br />
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"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."<br />
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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.<br />
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"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." <br />
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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.<br />
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"What should I do about that clot?" I asked.<br />
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"I'd have your Oncologist look at that one" he said, making it clear to me the appointment was over.<br />
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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.<br />
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"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?"<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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).<br />
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<br />Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com3tag:blogger.com,1999:blog-4758504882854865770.post-12931789729733676622012-05-01T12:07:00.000-04:002012-05-01T12:07:36.176-04:00FU Cancer, One Last TimeI'm done with chemo.<div>
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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.</div>
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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.</div>
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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!</div>
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Not so fast, came the bad news. I did test positive for something called the <a href="http://en.wikipedia.org/wiki/Lupus_anticoagulant" target="_blank">Lupus Inhibitor</a> 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. </div>
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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. </div>
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Wait, I probably do have it: the blood thinner I'm on is not one that normally produces a false positive.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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."</div>
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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.</div>
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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." </div>
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Well one surgery, one biopsy, two separate chemo regimens, and a round of radiation later I'm still waiting to be cured.</div>
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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.</div>
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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.</div>
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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. </div>
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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.</div>
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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.</div>
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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."</div>
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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. </div>
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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."</div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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</div>Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-92117194998864181732012-04-24T09:55:00.001-04:002012-04-24T09:55:39.232-04:00What Would Lenny Skutnik Do?I'm back in the chair this week for my final hell week of chemo. My veins are almost healed, but still some tightness and puffiness in the veins. But the doc thought I could continue so yesterday I started again. It was a long day, chemo went until 5 pm. Nausea started up almost immediately. <p>But I managed to eat a normal lunch and dinner. I went to bed early but was again awake at 2:30 am where I moved to the couch and played video games until 6 when Jules got up. We took Bica for a walk and had breakfast. After the usual morning cleanup I took the bus into the drs office where I sit now with an iv in my arm and pre-hydration running into my veins. <p>This probably isn't the right venue for what follows but it's been on my mind for a while. Some of it most of my life, well at least since that fla air flight crashed into the 14th st bridge. <p>I can remember watching the drama unfold on tv in Florida that day. Watching as a regular guy did the most heroic thing I've ever seen. Stripping down and diving into the icy potomac, water full of blinding jet fuel, swimming against a current to save the life of a woman who was too weak to grasp the life saving ring from the helicopter above. Lenny Skutnik was that man and the fact that he has been humble about his actions make it all the more an incredible story. <p>Years later I would learn that Skutnic had a wife, which makes his actions even more incredible to me. I can't imagine being in his shoes that day, knowing that by going in the water I would likely die instead of saving a life and that I'd never get to say goodbye to my wife (these were pre cell phone days). <p>I'm not really sure where I'm going with this, I've just always wondered if I could have done what Skutnik did that day. And I've tried to help people out, strangers often, when I see they need help. Nothing heroic, helping to push stalled cars out of the road, holding doors open for others, etc. all minor things that everyone should do, and most probably do. <p>I hope never to be tested like Skutnik was that day, I'm worried I would be like the numerous bystanders that terrible day who all stood around watching (including many emergency personnel). I don't want to find out that I wouldn't rise to the occasion, and I'd be terrified of dying myself and leaving Julie alone (she'd never forgive me). <p>I don't know if this is my point or not, but I need to end this eventually. If Lenny Skutnik could face a snowy, frozen Potomac river to save the life of a complete stranger, well I think I can survive cancer treatment.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-68564901820622906332012-04-19T10:56:00.000-04:002012-04-19T10:56:55.055-04:00Breaking Up Is Hard To DoAfter a little more than a week the pain & discomfort of the clots is finally starting to dissipate. The arms are much improved, from what they were last week when I had to go to the hospital. Swelling is down in my left arm, and the hard veins in both arms are starting to soften up.<br />
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We saw the doctor last night and he was relieved to finally see a big improvement in my arms (there still wasn't much improvement when we saw him just a few days earlier on Monday) and the pain had gone down enough that I stopped taking percoset around the clock, and instead switched to Advil. <br />
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Going off narcotics after a full week of taking them every 4-6 hours didn't bother me much until about 2:30 am last night. I got up to take more Advil but never was able to go back to sleep. I moved to the couch with Bica and turned on the TV. I was in luck, two good movies were just starting. My favorite WW2 Submarine movie, Run Silent Run Deep and a great old John Candy (& Eugene Levy) movie, Armed and Dangerous. I know both movies pretty well so I was able to flip between both to see all my favorite scenes. Unfortunately that meant I was awake for good even if I wanted to sleep.<br />
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Maybe I should go back in time for a minute though since in my last post I was in the hospital. I stayed overnight last thursday night and I was really in a great deal of pain. The hospital would only give me pain meds every 6 hours (Julie told me later I was giving them too low a number for my pain on the 1-10 scale, probably correct). I also did not have a private room, instead I had a Pakistani young man in the room who was on the phone (I'm not kidding) non-stop. In fact I think he had two phones, one of which had a barking dog as the ringtone. Sleep was out of the question both because of the pain in my arms and the pain the ass roommate. He finally went to sleep about 1 am, I slept off an on until 4 am when I could take pain meds again.<br />
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At 6 am I got another blood thinner shot in my stomach, a practice Julie had continued at home. 6 am and 6 pm she shoots me full of Lovenox (70 mg).<br />
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Anyway Julie & my mom showed up at the hospital at 8 am when visiting hours started, and after another day of feeling like I was in a Pakistani immersion course I was finally discharged around 4 pm. I was in desperate need of a pain pill, but being discharged I had to go get prescriptions filled then head home where I was finally able to relax.<br />
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It took until the following Tuesday morning (just a few days ago now) before I could really notice a reduction in pain and swelling in my arms. But since then it really seems that each day it's a little better. I can now imagine a time where my arms are not constantly killing me, and I can almost straighten both of my arms.<br />
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No telling how long Julie will have to give me these shots, "indefinitely" was the word used by the hospital doctors. My oncologist wasn't so gloomy. He seemed to think we could revisit the medication each monday, depending on how I react to upcoming chemo treatments.<br />
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Speaking of which I'm not getting treatments this week (did I already mention that above?). When he saw my arms Monday he postponed treatment and we will revisit on Monday to see if I'm well enough to continue. Of course that's nice in some ways, I'm feeling and eating better now and without the narcotic in my system I expect to be less sleepy during the day and to sleep better at night.<br />
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On the flip side, I would have just one more day of treatment for my final big week had I started on Monday. I'm ready to put chemo and cancer behind me, for good I hope. I'm ready to move on with my life. If I ever have 3-4 months off or more from work again, I want to spend them doing something I love.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-34133378987568661882012-04-12T22:41:00.001-04:002012-04-12T22:41:43.377-04:00ComplicationsThis blog post is coming to you live from GW Hospital via my iPhone. Expect lots of grammatical errors and randomly wrong words as the auto spell correct makes mistakes I dont catch. I'm also several morphine injections and percosets into the evening which won't help matters. <p>So it's been an eventful day. It all started early Monday morning when I woke around 4 am with my right forearm in a good deal of pain. Tender to the touch with a hard knot under the skin, I was getting a bleo treatment that morning and seeing the dr first. I told the dr about the pain and knot, he thought it was phlebitis and told me to give it hot & cold compresses and to take Tylenol. <p>The bleo treatment went great, for the first time no fever or chills. But my right arm was killing me. I didnt sleep well Monday night, and when I woke on Tuesday my right arm joined my left in pain only now both were swollen too. <p>Tuesday I continued advil and heat (which gave more relief than ice) and felt a little better. But Tuesday night my arms were throbbing and I emailed the dr. <p>The doc had me come in Wednesday. When he saw my now swollen, red arms he was very concerned. He gave me an rx for an antibiotic and told me to take it overnight. If I felt no relief I was to get ultrasounds on my arms. <p>No relief wed night, so this morning it was back to the docs. I got the ultrasounds at 1 pm and they confirmed my fears. Blood clots in both arms, from elbow to wrist. The doc sent me to the ER where he wanted me admitted for an overnight stay to start me on blood thinners. <p>So that's where I am. My mom was supposed to fly home tomorrow morning, but she's now staying at least through Sunday. The ER was miserable and took hours to get me back, then several more to get admitted to the hospital. But I'm there now, we sent my mom home around 9 pm to get to Bica. Julie hung out until a little after 10 when visiting hours ended. <p>This is serious, but I should be ok. Lots of questions about continuing my treatment but I won't have those answers for a while. <p>The blood thinner shot, by the way, is given in my belly twice a day. Good times. <p>Drugs are catching up to me. Time to sleep.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-60471279077755711882012-04-03T15:54:00.001-04:002012-04-03T15:54:31.160-04:00Hell WeekI thought maybe I should start out with some good news for a change. I have survived the second of three hell weeks, where I get chemo Monday through Friday for about 7 hours a day. It was a rough week, but it's over and now I get a 6 days to recuperate before receiving chemo again on Monday.<br />
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More importantly, there is just one hell week left. It is scheduled to begin April 16th, although it could be pushed back a week if my blood work doesn't come out ok. But if that's the case I'll finish chemo the first week of May, and return to work two weeks later on May 21st. <br />
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Last week (hell week part 2) was in some ways easier than the first full week of chemo. I knew the drill & what to expect, had a better relationship with the nurses, Julie and I were on a better schedule. But it was still tough, miserable really. Physically I probably felt worse, but again it's so hard to judge pain, nausea, and misery after the fact. Or to compare it to earlier misery, for that matter.<br />
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But the week went basically as the first one did. I was feeling good enough to run on Monday morning, but then never again exercised that week. I'm not sure I even took Bica for a walk after Monday night. Wednesday through Friday were the worst days, but Friday again I was loaded up with extra anti-nausea medicine so Friday afternoon and evening were much better. But that extra medication includes steroids which meant very little sleeping Friday night, I took a pill to help combat that and did get some drug induced sleep. But it wasn't very restful and although I made myself walk Bica a few times on Saturday, I felt pretty crappy.<br />
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One of the newest side effects I'm feeling is bruising and pain in the veins in my arms. Having IVs repeatedly inserted into your arms to then receive hours of medication/poison into your veins apparently isn't good for you. I've been having them put an IV in my arm each day for the last several weeks, so it's typically a different spot (usually on my hand) each day they're poking. But these IVs can get clots and have to be removed and a new spot found. There is nothing worse than being just about finished with chemo for the day only to have your IV blow and you get stuck 2 or 3 more times while they try to find a vein that will take the medication. <br />
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It's not all bad, sometimes they find a good vein immediately and it runs fast, the meds pour into you, and you're out of the office 30 or 45 minutes early. This usually happens Monday or Tuesday. But by Wednesday and later in the week, your (or at least, my) veins have had enough. You get stuck in one place and it works for a few hours, through your second or third bathroom break, then it's not good anymore. They remove the IV, bandage you up, and start the hunt for a new location. Last week, I think it was thursday, I was stuck 4 times while they tried to find a good vein. I'm grateful that I now get 6 days to hydrate and let my veins relax a little before the next chemo dose.<br />
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Julie gave me another shot on Saturday, again the Nulasta (sp?) drug to help my bone marrow produce white blood cells. I had no reaction to the first shot, but this time around I did. You can get some pretty nasty bone/joint pain from this shot, and I woke up early Sunday morning feeling like every muscle in my body had been ripped apart the day before. All of my muscles and joints were cramped and painful. I took lots of tylenol which probably did help, but not enough to stop my tears and moans. Sunday night was rough, I again took a pill to help me get some sleep but by 2 am I was wide awake, still having pretty bad muscle pain. I moved to the couch and played video games for about 3 hours until I finally fell asleep for another hour or so.<br />
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This made for a pretty miserable Monday chemo treatment. I was tired from both the week of chemo, sleeping pills, and lack of sleep. My mom was arriving from Florida that morning and we were hoping to be back home early, but everything ran slow on Monday. Seeing the doctor took longer, the office was full of chemo patients so it took longer to get the IV and medications going, and then my veins were not cooperating. The slowest drip my veins have had yet. Normally the Bleo-only Mondays take about 45 minutes to complete the chemo once the IV is set. I had the IV in my arm around 10:15, but didn't leave the office until 12:30 pm.<br />
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Bleo-only days are also physically the roughest, I've described the hours of chills, crying, and moaning that then leads to high fever for another set of hours. So to get home and see my mom, but basically have to bypass her for the couch and numerous covers was hard on everyone. Then she got to see and hear my misery first hand, it's not pretty. Even the things that probably sound funny (uncontrollable flatulence, for instance) are not funny to me in the moment. Painful and humiliating, I was in bad shape for a good number of hours. Moaning, crying (sobbing, really), miserable and in pain. But this was the easiest Bleo-only Monday so far. The doctor upped the benedryl dose and I took more at home along with tylenol around the clock. So instead of 10 hours or so of misery, it was closer to 4-6 hours. 4 really bad hours, then 2 not so bad as the fever reduced. I could tell my mom wasn't prepared for just how bad it (I) can be, no one could be prepared, but she'll at least better know what to expect for next Monday.<br />
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But the fever broke and I went to sleep early, and woke up as usual at 2 am. I went to the couch, apologized to my mom sleeping on an air mattress next to me, and played video games until about 4. Fatigue took over and I went back to bed until almost 7. <br />
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So this week I know what to expect. I feel a lot better today and things will get progressively better each day this week. I take frequent naps after short walks with Bica (and now my mom), drink as many fluids as possible, and consume as many calories as I can.<br />
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The idea of possibly just four more weeks of chemo, and then two weeks of R&R, and then finally getting back to my normal life. Working again (you wouldn't believe how much I miss work), dressing nicely and wearing suits again, going out to eat, drinking beer.<br />
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There's a light at the end of the tunnel.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-24158536477950468172012-03-21T11:32:00.000-04:002012-03-21T11:32:37.963-04:00Now I Look Like I Have CancerAt the end of the second week of chemo I was running my hand over my hair but none of it was coming out. With my hair cut down to stubble I thought I might start seeing it come off on my hand as I massaged my head, but not at that two week point.<br />
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But that same day I pulled on some of the hair on my head and it came right out. I had to pull, it didn't fall out, but I didn't have to yank and there was no pain. So I knew I was right on the edge. On Monday I had to go for my third Bleo treatment (the end of my first course, this coming Monday starts the second course with the full week of all day chemo treatments) and again I had a terrible reaction to the drug.<br />
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I had told the nurse how I'd been chilled and feverish for 9 hours after the last dose, so they gave me tylenol and told me to keep taking it and benedryl if I continued with chills. This time they gave the benedryl in a pill rather than an IV so I wasn't asleep in the chair like before. The pills take hours to make me sleepy, and it never gets as bad as via the IV drip. The treatment again only took about an hour so Julie and I were back home by 10:30. She picked up chinese food at my request (for a few days sesame chicken and white rice was calling my name) around 11:30 and I ate a pretty good amount, feeling pretty good and sleepiness just starting to kick in. And no chills or fever so I thought I might be safe.<br />
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But around 12:30 the chills started, and then it was a repeat of the previous week. Miserable chills for about two hours. Very much like having the flu, because it's not just chills but chills with body aches & pains, and the emotional instability that comes with the flu. A polite way of saying I was off and one crying, wailing really, like a baby. With the chills and pains the pity party went into full swing, the "why-me's", and the "I don't want to do this anymore's" etc. It wasn't pretty. A few hours of the chills and the rest and it again transitioned to a big fever. Started off at 102.5 and slowly, over the next 5-6 hours went down to almost normal. But this time it never quite broke, hoovering around 99-100 degrees all night. Well not really all night, I only slept about two hours and was up at 1:30 am I'd already taken 6 extra strength tylenol by that point but took two more since the fever and aches were still present. I stayed up on the couch watching really bad tv & movies (Burt Reynolds in Copy and a Half... filmed in Tampa at least) and around 4:30 fell asleep. The alarm went off at 6, Julie came out to see how I was and since it was thundering (Bica's not going out in lightening) we all went back to bed until about 8:30. After that I was much better physically, but emotionally I was still depressed.<br />
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Around 3:30 pm I finally got out of pjs and took Bica for a walk (don't worry, Julie had taken Bica out several times before that). That and a shower seemed to snap me out of the depression I'd been stuck in.<br />
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My hair on Tuesday started falling out faster, although still not noticeably so when you looked at my head. And I was always curious about this so I'll let you know, it's not just your head where the hair falls out, but so far it's not everywhere. My facial hair isn't coming out yet (beard, eyebrows, eyelashes) nor is my arm or leg hair. But my chest hair and pubic hair (I hesitated to write that for modesty's sake) are falling out faster than that on my head.<br />
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This morning the hair on my head is coming out in earnest, although still in strange patches. My sideburns and the sides of my head are losing the most hair, almost bald in those areas really. The very top of my head (like what a yamaka would cover) has lost most of the hair too, according to Julie. But the very back and front are only thinning, not yet patchy. I look like a dog with mange. But the speed with which this has gone from having to pull hair out (Sunday) to hair falling out (Wednesday) tells me that I won't look mangey for much longer. A few more days and I'll probably be completely bald. This morning in the shower I put soap on my hands and massaged it into my head. When I looked at my hands they were covered in hair. I think hairy palms are a sign of lycanthropy.<br />
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I've talked about hair-loss a lot during these updates I know, but I really don't mind this part. I know it's temporary and I lived much of my life with really short hair. So I'm not bothered by my scalp (normally) or baldness. I'd take baldness over cancer any-day. But I do mind baldness when my head is covered in acne blemishes like it is now. In fact I would have shaved my head this morning to get it over with but there are so many open and/or painful sores on my head it seemed like a really bad idea.<br />
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The other side of baldness is now everyone will know something is wrong with me. Living in a condo you have 160 other neighbors, plus the people who work the front desk in the building, and then the various people who I see and say hello to everyday on the street. Going from long to extremely short hair already got a lot of comments, and I did tell some people what was going on. I've told most neighbors who I know reasonably well, and a few of the front desk workers. But sometimes I've let comments about my cutting my hair go with just a smile and a "yeah, it's all gone" kind of comment. Sometimes I don't feel like dropping the depressing cancer bomb on people I barely know. I know that over the next few months they'll have plenty of time to see me without any hair and will figure it out.<br />
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I expect this week to be a lot like last week, so far it's proving to be. A rough Monday & Tuesday from the bleo treatment, and then feeling better the rest of the week. Certainly my nausea has been greatly reduced these last few weeks. I'm only taking medication once a day, sometimes skipping a day all together. But my fatigue level is much worse. I generally get up around 6 or 7 am, shower and have breakfast, and walk Bica. When I get back I relax for a while and try to hydrate, take Bica out again around 11 am, eat an early lunch and then I'm wiped out and go to sleep. I wake up hours later and it takes me another hour or to to really get moving. But this is all much easier than the big chemo weeks, I'm really dreading the start of another big week on Monday. In particular now I'm terrified about the bleo dose I get that day. If I have the same reaction as the last two mondays it will be really rough having chills and a fever for hours while an IV line is stuck in my arm feeding even more medicines into my body. I hope the steroid they give me Monday will counteract these effects. I see the doctor on Monday prior to treatment so I plan to let him know my concerns prior to treatment. Maybe they can make Bleo the last medicine I receive so that I can get home before the bad effects take hold.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-36366762762735714082012-03-15T07:10:00.000-04:002012-03-15T07:10:50.241-04:00Now I Feel Like I Have CancerRereading that last post I see that true to my grammar warning I've made some embarrassing mistakes ("steak through a vampire's heart"... I hope it was bone-in or frozen. I assure you the needle went through my skin much easier than a ribeye), this post and all future posts (I'm sure the past ones have them too) will probably have its/their fair share of those same issues. So know that I see them later on, but I'm too lazy to fix them, and I sort of enjoy the time capsule nature of being able to go back and see just how poorly my brain was functioning at a particular moment.<br />
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I can also see that I might have left the impression that I'm in constant misery. So far each day, even a day like this past monday with the 9 hours of chills and fever, there are several lucid and reasonably pleasant hours when I want to talk, laugh, can enjoy a little food and drink, enjoy a 20 or 30 minute walk with Bica, etc...<br />
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But mostly I don't feel good, or normal. I don't feel like myself. I probably said this last year during radiation treatment but now I feel like I have cancer. It's the treatment that makes me feel rough, not the cancer. And as bad as radiation was, I was still able to run, work an almost full schedule, eat & drink, etc. Chemo is a whole other beast. It's not just the more severe side effects like nausea, fatigue, diarrhea. There are a whole host of other, annoying and uncomfortable side effects that you deal with on a daily basis, even those periods when I feel otherwise pretty good.<br />
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One of the strangest side effects is that my sense of taste and smell is so off. With radiation I had a strong metallic taste in my mouth immediately after treatment, that was awful. No metallic taste with chemo, but my tastes are completely off. Things I normally do not eat or have not eaten since I was a kid (american cheese comes to mind) are some of the only things I can eat. While things I normally love (coffee) I can tell you I'll never have again until well after treatment is finished. That chicken soup Julie and I made the Sunday before treatment began? I ate it Monday and Tuesday, and never again. The very idea of something even as comforting as homemade chicken soup is enough to turn my stomach. Even writing that sentences is hard for me now, I start to feel nauseated. There are too many examples to list, but for whatever reason some foods that you might think would cause me problems (milk and dairy products) go down fine. I've continued to enjoy milk and cheese (well american cheese anyway) with almost every meal.<br />
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The sense of smell is even more bizarre. Everything I smell seems to be coated in a thin layer of years old cigar smoke. It's like everything that comes near my nose has been sitting in an old cigar bar waiting for me to pick it up. Clothes, skin, blankets. This smell/sensation was much worse during the week of full chemo, it's lessened this week, so it must be from the etoposide or cisplatin and not the bleo.<br />
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One constant side effect since this began has been that I don't wake up normally either. Overnight or just a nap, I might sleep peacefully but prior to waking I have this sort of twilight period where (no dreams that I can remember) I'm fighting to get up. It's frightening and confusing, I'm flailing around and making muffled sounds (according to Julie). In fact last night I elbowed her in the face when I was startled waking up during one of these episodes. Julie's fine, I should note, luckily she was barely inside my elbows reach. I felt (and feel) terrible about it though (happy birthday Julie!). Every time I sleep this sort of jerking around happens, and since I now sleep in shifts it's happening 3-4 times a day.<br />
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Those are some of the stranger side effects. But there are a host of others. My skull (which has yet to lose any hair, although I know that day is coming) is covered in acne like blemishes which are painful and unsightly. I say acne like b/c I'm not sure if they are really acne, or ingrown hairs, or just sores. There are no pimple heads on them like a normal zit, but there are a lot of them and it's really uncomfortable. <br />
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I also have been getting sores in my throat every so often. I have one now and each time I swallow it's slightly painful and makes falling asleep (and staying asleep) difficult. Sort of like having a sore throat I guess, the first one took about 3 days to heal. I only had two days off before this next one came along, so I might be dealing with these throughout treatment.<br />
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Well no one needs to read an entire catalog of my problems, I know, but there are still so many others I can list. My heart often races along suddenly for a few minutes out of no where. Sort of a crazy fluttering that then goes away. Other times I feel like I can't quite control my fingers as I try to type. <br />
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Cancer treatment is certainly no fun. The hell of it all is that these are all just short term side effects and at some point treatment will end and I'll start to feel like myself; but then I'll always live with the fear in the back of my mind of the possible long term side effects. The scariest of those is a secondary cancer caused by the treatment I'm receiving now. Extremely unlikely of course, and nothing I should worry about now. But that's easier said than done.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-41389619155778831292012-03-13T09:56:00.000-04:002012-03-13T09:56:38.347-04:00Harder Than You ThinkThis is probably going to be a big, rambling update. My mind doesn't work like it used to, I have a hard time focusing my thoughts and speaking clearly. I assume this is what is referred to as "chemo brain." I'm not even going to pretend to review this for spelling and grammar so if something doesn't make sense or is contradictory, just skip it.<br />
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My previous post after just two days of chemo was probably the last time I felt somewhat like myself. But to start I want to mention that I was wrong about the steroid I'm receiving. The IV steroid isn't to make me urinate, instead it's to help keep my body from having severe reactions to the BEP chemo drugs being administered. I get that steroid every Monday, Wed, and Friday of the week-long chemo treatments. That same Mon-Wed-Fri I also get an IV of anti-nausea medicine which is much more powerful than the zofram tablets I take every 8 hours.<br />
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But everyday I receive BEP I also get a kidney flush drug via IV and this is the one that makes me have to urinate all the time. <br />
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This is all really difficult for me, more so maybe than I thought it would be. Wednesday morning of the first week of chemo was when I first really felt like maybe I didn't want to do this. I mean, of course I'm going to do it, but that third day of treatment the nausea was so intense, I had barely slept, and I didn't want to eat or drink anything. Wednesday morning was the first morning I didn't run, the first morning I didn't drink coffee. I really didn't want to go to the office that day.<br />
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When I got in I told the nurses how nauseated I felt so that's when I found out that I get the anti-nausea IV every Mon-Wed-Fri, they had hoped it wouldn't have to be that often but upped the dose to match my reactions to the drugs. Although it's an IV you don't get instant relief, it generally takes a few hours, maybe by lunchtime, before I feel better. But once it kicks in I'm generally good for the rest of the day with just mild nausea to deal with. Mild nausea sucks, but it's night and day compared to the severe nausea.<br />
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Most nights I fall asleep now around 9 or 10 pm and wake up about 2:30 in the morning. I move out to the couch and watch tv or read or sometimes go right back to sleep. Often I'm up though for the duration, I hear the alarm go off hours later and Julie wakes up. She takes Bica out for a run while I lie on the couch in a mildy miserable state. <br />
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Friday of the first week of chemo was the worst. Nausea was severe, I kept food down but just barely. It was the only day so far where I really wanted to give up. I did not want to go into the office. Again I told the nurses how miserable I was feeling and they pumped me full of even more anti-nausea drugs and gave me an additional rx for a steroid to take over the weekend if things got worse. Julie showed up with a ham and cheese sandwich for me just before noon and when I finished that I felt much, much better. Color had come back into my face and I looked and sounded better.<br />
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Saturday was a lost day. I never felt terrible but never felt great. In fact I never even left the condo, I'm embarrassed to say. But there was some excitement on Saturday, Julie had to give me a shot. She'd received the instructions from one of the nurses (I volunteered Julie) and it needed to be giving 24 hours after the end of the Friday chemo session. So at 3:30 on Saturday Julie pulled out the shot and stabbed me in the arm like she was driving a steak through a vampire's heart. <br />
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Sunday morning was the best I've felt so far. I took Bica for a walk around 10 am and ran into a coworker and her family. I was so glad they saw me at my best and not the depressing, pasty-faced, bleary-eyed, hunched over walking zombie I feel like I am so much of the time.<br />
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Monday (yesterday) was just a bleo day. Julie came in with me and I got benedryl again and then the bleo dose and a flush, but that was it. We also saw the doctor before treatment (which is good, because that benedryl knocks me out) and he was really concerned about my weight. The one thing that now might delay treatment is the amount of weight I'm losing. I'm going to try to bulk up this week and next in preparation for the next big week of chemo coming up. But it's so hard, the thought of food is sometimes really appealing, but often a bite or two and I am full and feel sick.<br />
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I slept through the hour or so of the treatment on Monday b/c of that benedryl, and we took the metro home (Julie wanted to cab, I'll listen to her next time). I started getting chills as we walked home and they only got worse. Fever and chills are (as we found out yesterday) and common side effect of bleo, but you have to be careful b/c I'm now prone to severe infections. I took tylenol throughout the day but I was in bad shape for about 9 hours. First chills for a few hours from maybe 11 am to 1 pm, then a mild fever for the next 7 to 8 hours. Sometimes the fever wasn't so mild actually, but I did call the doctor and they were not concerned since I had just received the bleo. Apparently up to 24 hours after the dose you can have these symptoms. But my fever ranged from 100.4 to 102.5 off and on, around 9 pm it finally broke and I was starving.<br />
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I ate two ham and cheese sandwiches and drank so much water and ginger ale. I took Bica on a several block-walk to get outside and let some of the sweat dry, just to get outside, and to walk off all of that food and beverage I had consumed.<br />
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I slept pretty hard last night, woke up again around 2 am but went back to sleep until almost 7. A walk with Bica this morning and a breakfast of scrambled eggs. <br />
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It's hard for me to imagine ever feeling ok again. I know it will happen, hell I feel guilty even complaining. This BEP treatment is tough, some of what I've read on cancer forums call it one of the toughest chemo regimens to go through. But this is almost certainly going to cure me, and in a year or so I should be back to my normal self. But a lot of the people who receive treatment in the same office are not so lucky. They're dying, trying to stay alive for a while longer through chemo and other treatments. So I'm in there everyday feeling like shit, sometimes barely holding on emotionally and these other people (many are my age) have had failed bone marrow transplants, they're trying to shrink a tumor before surgery to remove a lung, and worse. They're never looking at getting back to normal, this is their normal, this is as good as it might get for them. <br />
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So it makes me feel like crap, my pains and my complaints. But I still have them. I still feel like crap most of the time, and often I feel sorry for myself. Hell some of these people who are dying are offering advice to me to help combat the nausea and other symptoms. You can imagine what an ass I feel like knowing that I have to put up with this for just a few months, when this is their life.<br />
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Not sure if I've described the room but there are 10, maybe 12 chairs in the room so it's reasonably social. There are no secrets that's for sure, you hear the blood counts of each person, you can see the drugs and treatments they're receiving. Since my treatment has me there all day, everyday, for a week I see numerous people come and go. Some people just get shots, others receive a 1 or 2 hour treatment. Very few (1 or 2 others) are there for all day treatment. You get very used to hearing about the ailments of others, the disappointments as someone's treatment is again delayed because their white blood count wasn't high enough, etc. <br />
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On Friday the doctor brought by a young guy who had gone through this same BEP treatment a few years earlier. Probably a 5 years younger than I am, we exchanged pleasantries and email addresses, but it was at the point Friday morning when I was still really out of it. But I did email this guy to say thanks for coming by and to see how it went for him. Part of my not being to scared with the fever yesterday was he told me he would get fevers after bleo. He also mentioned it took him about a year to feel like himself again after treatment ended, and that 6 months after treatment he lost all of his hair again. It was worth emailing just for that bit of info which would have freaked me out big time, if that should happen to me.<br />
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I don't know how much I'll post again until the next big treatment starts.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-35472539889385578852012-03-06T20:17:00.001-05:002012-03-06T21:41:45.990-05:00Only 61 Days To GoWell this will come as a surprise to no one, but chemo sucks. I'm only two days into this, and I feel pretty miserable. But it's also (so far) not as bad as maybe you think either. I don't plan to give a day by day rundown of my treatment going forward, unless something out of the ordinary happens. In fact I may not update this blog much during treatment as I'm guessing this one will cover the mechanics of chemotherapy. But you never know, maybe I'll feel like writing as a way to deal with some of this.<br />
<br />
Julie & I had a pretty nice weekend out in Ocean City leading up to treatment. We saw my cousin and her boyfriend (we see them often when in OC), but mostly watched movies, drank beer, and ate poorly. Sort of a last hurrah before treatment. On Sunday we drove back to DC early and spent the day making a huge pot of chicken soup for the week.<br />
<br />
I slept pretty good Sunday night, and we got up and did a 5 mile run Monday morning. I showered (showers are a breeze now with almost no hair) and had coffee and breakfast at home, then packed up a bag with my various electronic gadgets, snacks Julie had prepared, a PB&J, some hard candies, and a bottle of water.<br />
<br />
The first day of chemo I had the IV line run in the my arm (twice actually, the first time they couldn't hit the vein) then received a 60 minute drip of saline, followed by a 30 minute drip of a steroid that helps keep my kidney clear (that is, it makes me pee a lot), followed by a 30 minute drip of anti nausea medicine. Somewhere during those drips the doctor said he wanted to chat with me soon, and that he'd come by in a bit. I wish he had stopped by at that point because the next drip I received was a 30 minute drip of benadryl. <br />
<br />
Benadryl knocks me out. Even when I have to take it at home when my allergies are particularly bad, I take just 1/2 a pill and generally need 30-40 hours after the pill to feel like myself. This 30 minute drip was a big dose going right into my blood stream. The doctor came by after the benadryl drip was over and I was getting another saline flush, and I could barely talk. I was completely out of it. As soon as he left I sent myself text messages of what he had asked me to do and honest to god I had to review those texts when I left for the day because I had no memory of the conversation.<br />
<br />
Anyway after the benadryl I received a very small syringe of the bleomycin. That's the "B" in the BEP chemo I'm getting. Bleo (as it's called) can have severe side effects so they give out a test dose first to see I have any reaction. After that syringe is shot into my IV line I get more saline flush, and then the cisplatin.<br />
<br />
Cisplatin is the "P" in BEP, as it's a platinum based drug. This is the big one, the drug that causes most of the nausea, fatigue, and hair loss. It's an hour long drip followed by an hour long saline flush. Also I should note I'm recounting all of this as best I can because in reality I was in and out of consciousness for most of the day after that benadryl drip. Most of the day was passed in a buoyant state, like I was floating on water. I'd become vaguely aware of the beeping of the machine my drip ran through noting that a bag was empty, which would alert the nurses to that it was time to change the bags. I somehow managed to eat, drink, and get disconnected to go to the bathroom throughout the day.<br />
<br />
After Cisplatin came Etoposide, the "E" in BEP. Again an hour long drip followed by a flush, although I think just 30 minutes this time. The Etoposide was followed by the real dose of Bleomycin (since I'd had no reaction after the small dose hours earlier) and then a 30 minute flush. That was it for day one, I'd arrived about 8:30 in the morning and left about 4 pm.<br />
<br />
I had to drop off some paperwork at the office although I was loath to do so. I'd mostly come out of the benadryl coma, but I wasn't in great shape. Still I did drop off the documents and stopped by to say hello to my coworkers. From there I went home and ate soup & toast (had trouble swallowing) and slept until Julie got home, then took the first of my anti nausea pills as I could feel the chemo effects coming on. I told Julie about the trouble I had swallowing bread and she told me she had read about that as a side effect of chemo. No more PB&Js for lunch as it was the bread that was hardest for me to get down. I went to bed early and slept pretty well until about 3:30 am. Once up I took another pill and then read on the couch for a while before falling asleep again.<br />
<br />
At 5 am the alarm went off and by 5:30 Julie, Bica, and I were out for our morning run. I didn't feel too bad and hadn't experience any vomiting or diarrhea so we didn't shave the run back too much. 3 miles instead of our normal 5, I was feeling a little fatigued and winded (I assume from the Bleo which can have negative pulmonary effects).<br />
<br />
After a shower, coffee, and breakfast I again made it to the doctors at about 8:30 feeling ok. My original IV port was still in my arm (the last thing I received on Monday was an anti-coagulant to keep the port from sealing) so they just had to connect a 60 minute saline drip and the day began. Without any benadryl I was wide away for the day and spend my time watching a not very good movie, reading a few books, and listening to music. It's very boring, and even with all the saline drips you still get pretty thirsty, so you spend a lot of time snacking, drinking water, and peeing. Everyone is very nice, the chairs are set up in an L shape against the walls of the room, the nurses have station opposite the L and in the middle of the room are various saline bags, drip lines, gauze, tape, needles, and other supplies. <br />
<br />
<br />
I got the steroid again after the drip, but from there I received the Cisplain, another 60 minute drip. At this point it was already noon so I ate some grapes Julie had packed for me followed by a cold bowl of the chicken soup we'd made Sunday (I have a soup thermos now, so no more cold soup). Still it wasn't bad cold, and it was easy on my stomach.<br />
<br />
Next up was the Etoposide. After the Etoposide I had another 60 minute saline flush, but needed to use the restroom. When I got back the port had sealed up, so I had to have that one removed and a new IV line put in. That set me back quite a bit, I was on course to be out of there by 2:30 but ended up not leaving until 3:45.<br />
<br />
Although I looked better today, I felt a lot worse. Still no severe nausea, but I started hiccuping around noon and it was really unpleasant. These were not the cute "I had too much champagne" hiccups, but more like "any one of these hiccups could turn exorcist ugly" hiccups. They've come & gone several times since, I just got over a bout a few minutes ago.<br />
<br />
Julie stopped by to see me this morning, I know it pained her not to be there for the first day but I'm glad she wasn't. She'd have only seen me sleeping. My primary care doctor (also in the same building) stopped by to say hello as well.<br />
<br />
I also continue to receive calls & emails from my urologist who is (as I've mentioned before) just a hell of a guy. The most empathetic doctor of the bunch, I know he's really upset that none of the other treatments took care of this in 2010 or 2011. I mentioned in an earlier post that he had done all he could to get the slides from my original surgery for me on that Monday we were flying to Indianapolis, but I don't think I ever followed up to note that he did come through for me. At 3 pm on the Monday we flew out I was metroing to GW to meet with the person in pathology to pick up the slides, and I was able to deliver those to Dr Einhorn prior to my meeting. I won't ever forget how he came through for me.<br />
<br />
Anyway I was told to stay away from fried, fatty foods during chemo. So today on my way home I promptly headed to a burger joint (Ollies Trollies, for those of you in DC) and got a double cheeseburger and fries. Took me about 35 seconds to eat it. Apparently nausea from chemo is just like nausea from radiation. Makes me hungry and sick at the same time. For my penance, I took Bica on a walk immediately after eating up to TD bank, since they allow dogs inside. I needed to deposit a check and Bica loves the attention and dog treats she gets inside the bank.<br />
<br />
I expect this to only get worse this week, and then to slowly start to feel better over the next two weeks before treatment begins again. Of course I don't know how much the Bleo I get every Monday will make me feel, so perhaps I won't get much of a break on feeling lousy. <br />
<br />
I will try to post at least once a week, but I'm not sure how I'll feel or if I'll have anything worth posting. I've received lots of cards and a few gifts, I hope you all know how much those mean to me. It might be a while before thank you cards are sent out, but they will be sent.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-44136046375419327682012-02-29T15:48:00.000-05:002012-02-29T15:48:37.654-05:00Silver LiningPerhaps the most reassuring words spoken by Dr. Einhorn yesterday were the following: "There isn't a dark cloud hanging over you."<br />
<br />
The trip to Indiana was well worth the expense. After an uneventful flight we checked in to the IU campus hotel which was directly across the street from the hospital/medical center where I had my appointment. We got up around 7 and put on our cold weather running gear, and first took a jogging tour of the campus (mostly to see where my appointment would be later that day) and the jogged into downtown. We read all of the historic/tourist signs we found downtown near the state house, then had breakfast at Patachou (home of the best cinnamon toast you'll ever have). After breakfast we did some more jogging/exploring around downtown, running through the historic canal towpath which was really nice, then jogging across the White River twice until we finally reached the hotel again. A pretty good distance, especially on a full stomach, probably in the 4-5 mile range round trip.<br />
<br />
I showered and got dressed first (in a suit, of course) and while Julie was getting ready I took all of those medical documents, slides, and CDs I'd collected on Friday and Monday and walked them over to Dr. Einhorn's office. While my appointment wasn't until the early afternoon, I figured I'd drop them off earlier (it was about 11 am at this point) in case they could be reviewed before our appointment.<br />
<br />
After that Julie & I met up and tried to make time pass as quickly as possible leading up to the appointment. It's hard not to let your imagination get the best of you as you watch the minutes tick by. "What if he says this?" "What if he says that?" You get the idea.<br />
<br />
Last Friday after our meeting with the chemo nurse when we heard what chemo would be like and that Einhorn was interested in meeting with us, I immediately ordered a Kindle Fire tablet from Amazon. I prefer printed books, but at $200 the Kindle offered easy access to books (borrowing through Amazon & my local library) plus a decent tablet computer for the numerous Netflix and other on demand I'll be watching. The iPhone screen is so small comparatively, although it killed me to buy the Kindle when I know there will probably be a newer, bigger version out soon.<br />
<br />
Anyway I mention that b/c I had received the Kindle before we left for Indy, and had borrowed several ebooks from the library for the trip. I tried to read to pass the time but my mind wouldn't concentrate. I'm not even sure what I was/am worried about or scared of. Not death (at this point), or of meeting the doctor, or even chemo (again, at this point). The unknown, I suppose, but even that doesn't sound right. But scared I was, sort of an empty scared feeling in the pit of my stomach.<br />
<br />
About 30 minutes prior to the appointment we went up to the cancer center and checked in. From there another hour or so wait with other patients and family. Everyone is there for the same reason, someone has cancer. But no one looked like me (or Julie, for that matter). I know how this will sound initially but hear me out. Everyone looked sick, and old, and beat up. Whether the patient or the family, they all looked bad, terminal. Meanwhile Julie and I young(ish), healthy(ish), we're dressed up like we are going someplace special (because to us, we were). <br />
<br />
Perhaps most importantly I don't feel sick. Throughout these last three cancer diagnosis(es?) I've never felt sick until I received treatment. Even the initial bump I felt on my testicle that started this whole mess never hurt, it was just a strange, pebble sized thing I could all of the sudden feel one day. Each time I've been diagnosed I've gone to see a doctor feeling 100%, only to have some treatment that knocks me down a bit and makes me feel like crap for a while. Reading back through the posts on this blog you can see my resolve failing a little from diagnosis to diagnosis. I still think I'm in a pretty good place, but this time is certainly harder than the last, and a hell of a lot harder than the time before that.<br />
<br />
The doctor was running behind but we had no where to go and that was fine with us, aside from the growing tension I suppose. Julie had brought a notepad and we had written down a few questions to ask, but otherwise we just sat with me pretending to read and Julie looking at trashy celeb magazine.<br />
<br />
Finally we got called back and I got the first (and only, really) bit of bad news. They took my vitals then had me take off my shoes and measured my height. 5 feet, 7.5 inches. 5'7.5"??? I begged the nurse to put down 5'8" but I don't think I convinced her.<br />
<br />
Vitals all looked good (except for that stupid height) and then we were directed to an exam room and told the doctor would be with us shortly. 10 or 15 minutes in a youngish female doctor came in and said she was a fellow working with Einhorn and would do the initial exam, which would be followed by Einhorn. We went through the timeline of this entire process, starting with my discovering the lump through to our arrival in Indy. Lots of questions about how I reacted to various treatments, which I choose the ones I did, etc. That was followed by an exam of my remaining right testicle (always fun to drop your pants in front of strangers so they can touch your privates), and then we were again waiting for the doctor.<br />
<br />
Not too long after the fellow left Dr. Einhorn came in, we did our introductions and then got down to business. He had a lot to tell us, so we basically let him speak without interruption unless he was looking for a response/asking a question. He was as nice, maybe nicer, than we had imagined. A very comforting presence, he might be the best in the world but he didn't rub it in your face. He knew our biggest concern was that there was something really wrong with me, different from other patients, and he did his best to reassure us. That's when he gave us the "no dark cloud" line above, and said that much like flipping a coin the statistics for recurrence were always the same, they don't build on each other from one treatment to the next. Just as you might flip a coin 5 times in a row and get heads, but on the 6th flip your odds are still 50/50. The same was true, he explained, with my cancer. There was a certain percentage chance that it would come back after surgery and that single carboplatin chemo (low, but a chance) and it did. And then the odds started over when cancer returned and I had radiation, low again but a chance it would come back. <br />
<br />
I'd taken a circular route to get to the big guns treatment of BEP chemo, but that's where I was now. He all but guaranteed I would be cured by this. He said something like "you may not want to hear this because you might feel jinxed, but this is going to cure you. As a doctor I can never say 100%, but this is a medically close to 100% as you can ever come."<br />
<br />
Undeterred we still asked "that's great, but we have to know: what if it does come back? Are there any treatment options left?" He reiterated that this would cure me, but that there would be some other options for treatment (survival chemo, I believe he called it) if it came back.<br />
<br />
A lot of this was on Julie, I did pretty good right up until Dr. Einhorn came into the room. Then I had a bit of that deer-in-the-headlights thing going on. I tried to answer his questions but often had to look to Julie for help. I tried to explain to him near the end that I really appreciated him seeing us on short notice, and that it was really an honor to have him consulting on my case. I always hope people can tell when I'm being sincere about that, and I also like to think the love and support Julie and I have for each other comes through. I think it does, and that genuinely nice people feel better about helping you when you don't come off as a dick.<br />
<br />
I'm not going a good job of describing just how pleasant and reassuring Dr. Einhorn was. This was a very expensive trip since it was booked just days before, but it was well worth the money. I told Dr. Einhorn we had one more question for him:<br />
<br />
"If you were in Indy for just one night, where would you eat?"<br />
<br />
"If you like steak," he said "you should to to St. Elmo, and you have to get the shrimp cocktail, it's a real experience."<br />
<br />
We had already heard of the place from others so that solidified it. A Tuesday night, in downtown Indy, and the only reservation we could get was for 4:45. Since we'd skipped lunch and now had waves of emotions (and a release of all of that tension) 4:45 was ok with us. It was about 3:30 at this point so we headed downtown, stopped at a bar to try one of the local microbrew beers (Sun King's Osiris Pale Ale) then walked in for our 4:45 reservation.<br />
<br />
Einhorn's recommendation didn't disappoint, and he was right the shrimp cocktail was an experience. I'm not sure it was a good one, but an experience none the less. Loaded with horseradish (look I love spicy food, I can practically chew on a piece of horseradish, but this was insane) it was so hot your sinuses and head were just throbbing with each bite. But the steaks and sides were great, and Julie & I were relieved and sometimes teary eyed. We kept commenting how strange it was to be relieved and excited, when I still have 3 months of hell coming up to receive the chemo. But we were relieved and excited.<br />
<br />
When we got back to the hotel we packed and almost immediately went to sleep. About 3 hours later all that meat, salt, and wine caught up with me and woke me up for some water, and then I didn't got back to bed until almost 4. After the water had done it's thing, the reality of the upcoming treatment slipped into my mind and wouldn't let go. These next few nights leading up to Monday are probably going to be spent tossing and turning, heading out to the couch so I don't disturb Julie.<br />
<br />
A miserably turbulent early morning flight from Indy back to DC, followed by a nap of a few hours with Bica, and I'm feeling ok again. The final follow up drs appointments this week and then 5 days of chemo starts Monday.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com1tag:blogger.com,1999:blog-4758504882854865770.post-61045421994351238622012-02-27T13:25:00.000-05:002012-02-27T13:25:55.666-05:00I'm Not Ignoring Your CallsAnother day of running around calling labs, visiting hospitals, faxing forms and requesting records. I picked up the pathology slides (from my most recent biopsy) this morning from Sibley Hospital, at the same time I requested CDs of all of the CT & PET scans I've had there. The slides were ready as I had already faxed over the request last Friday, but the CDs took about an hour to burn. I also received photocopies of all reports that go along with those scans.<br />
<br />
I also heard from my Urologist who had contacted GW on my behalf about the slides from my original testicular tumor. This Urologist is the best, he's a great guy and did all he could for me to get those slides today. It doesn't look like that's going to happen, but at least they'll be overnighted to Einhorn in Indiana before the end of the week. And there is still a chance they'll be ready today, I'm going to call around 3 to see if they are ready.<br />
<br />
Once I got back home I started scanning in all of the paper documents and copying the CD's onto my home network. I'm starting my own one-man medical library. <br />
<br />
When we got home yesterday from the beach and I had time to really review Julie's handiwork with my haircut, I realized it needed a lot of clean up. In Julie's defense those shears we were using were for a beard, not for shaving your head/getting a haircut. That's why she first has to use the hair scissors to get the hair short enough for those electric shears to even have a chance at cutting the hair. The shears/beard trimmer has nine settings, one being the shortest hair (stubble), and 9 being about 3/4 inch long.<br />
<br />
Since there was a lot of clean up needed on my head I decided to put the trimmer on the longest setting we had used and just run it all over my head for a while, trying to catch the many strays and uneven spots. "Julie," I asked "was the longest setting we used 8 or 9?"<br />
"7." Julie replied without hesitation.<br />
"7? Really?"<br />
"Yes, 7." my lovely wife confirmed.<br />
<br />
Well you can probably see where this is going. Because of my love of and trust in my wife, I didn't put it on 7 and test the length by running the trimmer over a side-burn or anything. I put it on 7 and went whole hog, starting at the front I took the trimmer straight back as I stood in the shower. The trimmer struggled and sounded like a lawn mower that hits a deep patch of wet grass. Uh-ho, I thought, as I watch what was left of my hair fall onto the tub floor. Oh well, I had intended to shave it this weekend anyway. So I continued over the rest of my head for the next 15 minutes. I called Julie in to help me make sure I hadn't missed any bit patches of hair.<br />
<br />
"You cut it really short! It looks good though." Julie commented as she walked in and saw me.<br />
"Yes, it does. It turns out 7 was not the longest setting we used the other day"<br />
<br />
Julie's confused face slowly turned to a big, guilty smile as she realized what I was hinting at. "Ooops!" she said before we both started cracking up.<br />
<br />
Mostly friends and family reading this blog. I wanted everyone to know I appreciate the calls/texts/emails but I'm unlikely to return them all. When I have info that can be shared on a very public place like this I'll post it, otherwise details will fan out via immediate family. Things are really good right now, I'm not sitting around depressed or miserable. Part of that is the busy work that's involved in red tape and tracking down records, but most of it is that so far that I'm really in good spirits. Both Julie & I have our moments, but for the most part we're both doing well.<br />
<br />
We've off to Indy in a few hours. Assuming I'm back on Wednesday as planned I'll post an update then.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-5302707214902228792012-02-26T14:32:00.000-05:002012-02-26T14:32:47.698-05:00Why Couldn't He Be At The University Of Hawaii?Friday ended up being a lot more exciting than I'd anticipated. Julie & I headed to the Oncologists office where I'll be receiving the chemo to meet with the nurse in charge of scheduling and administering the medication. This was the trip where we'd finally hear the gory details of what this particular treatment (BEP) would entail. <div><br />
</div><div>We'd met this woman before, back in 2010 when I first had that single dose of chemo (carboplatin) after the surgery to remove my left testicle. The nurse is very nice, and she also levels with you. She told us this would be rough, I'd lose my hair (as expected), and then went over the various other side effects and what to watch out for. Basically this is going to be really rough, and it's going to suck.</div><div><br />
</div><div>The schedule works out as follows: I'll receive 3 courses of BEP, each course is 3 weeks long. The first week of each course I receive chemo every day for 8 hours a day. That's right, week one of each course is daily chemo (Monday to Friday) from 9 to 5. The drips are slow, and are often switched out to a saline bag to flush my system and try to keep my kidneys from being damaged. Weeks two and three I only receive treatments on Mondays, and then it all starts over again the following Monday.</div><div><br />
</div><div>We spent a while with this nurse discussing the treatment, schedule, side effects, and various other matters. After that we met with the doctor to get the results of all of my recent tests and to discuss the plan going forward. All of my other tests looked good, and the doctor told me he had again discussed my case with <a href="http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=3017">Dr. Lawrence Einhorn</a>, world famous (to those with testicular cancer) for saving Lance Armstrong. Einhorn is the best there is when it comes to treating this cancer, literally changing the survival statistics from testicular cancer with his pioneering treatment. Einhorn had a few recommendations for my doctor about my case, but also said he would be interesting in meeting with me if I was so inclined. Of course Julie & I jumped at the chance, and contacted Einhorn's office immediately to schedule a consultation.</div><div><br />
</div><div>His office was able to fit me in on Tuesday, so we bought tickets to Indianapolis (Einhorn is associated with Indiana University) and immediately starting running around trying to obtain all of the necessary records from the various doctors I've seen. This is harder than you'd think. Paper records are no problem, my Oncologist said he could get all of that to Einhorn prior to my visit. But actual electronic copies (on CDs, mostly) of the various imaging scans I've had are harder to obtain quickly. Even more difficult, I needed to obtain the actual pathological slides from the two cancers which have been biopsied (the original in 2010 and the most recent in 2012).</div><div><br />
</div><div>I think I'll be able to get this all together on Monday, going from hospital to hospital, filling out forms and paying fees. Our flight is at 6 pm Monday night so I hope to have it all completed before 3.</div><div><br />
</div><div>We don't know what to expect from Einhorn, most likely he'll review and agree with my current doctors, and give his blessing to my treatment. But until we meet with him, we're really not sure. As it stands now I start chemo on Monday, 3/5, but that is now subject to change depending on Einhorn's opinion. We have flights back on Wednesday morning, but there is a chance (I suppose) that I would need to stay in Indy for additional appointments.</div><div><br />
</div><div>In other news I somewhat chickened out on shaving my head this weekend. I cut off most of my hair, it's shorter than it's been in 5 years, but because I was flying I didn't want to look too different from my drivers license photo. And hell I have another weekend now to complete the job.</div><div><br />
</div><div>But we did cut most of my hair off and it was funny and sad for Julie & I. We filmed the entire thing on an iphone, it took about 45 minutes. I've attached two clips that show the fun and easy beginning, and then a clip from near the end when we had a little moment.</div><div style="text-align: center;">PART 1 (About 10 Mins In)</div><div><br />
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</div><div style="text-align: center;">PART 2 (about 38 Mins In)</div><div><br />
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</div><div><br />
</div><div>Speaking of movies, we watched 50/50 last night. It was a pretty good movie and of course it's about a dude with cancer. Some of it probably hit home (considering Julie & I were off an on crying throughout) and it had me balling at the end. No really for the movie really, I had not had a big cry since all this started and I probably needed it. The movie helped.</div><div><br />
</div><div>When it comes to cancer films I'd put this up with there with Brian's Song and Champions. Brian's Song is of course famous for being a film that can reliably get men to cry, but if you've not seen Champions it's pretty good. Again testicular cancer, also based on a true story. That one was hard for Julie to watch.</div>Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-23487410773475353142012-02-23T17:26:00.000-05:002012-02-23T17:26:42.195-05:00Bald Is BeautifulAt least I hope so. The last couple of weeks have been very surreal, the last couple of days have been crazy.<br />
<br />
After the ct scan (6th month follow up from radiation) on 2/3 showed an abnormality, Jules and I have been worried but tried to be optimistic. Then I had to have the biopsy on 2/16 which sort of cemented for me the uncomfortable path that lay before me.<br />
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I'd never had a biopsy before and it was a lot more uncomfortable than I had imagined. It was a CT Guided biopsy, so I prepped just as if it were a normal CT scan only I couldn't eat or drink after midnight, and I couldn't take aspirin or anything that might thin my blood. That morning I had to pick up barium from the Sibley imaging department, then check in at the admissions section of the hospital. I think I checked in about 7:30. Around 8 am I drank the barium and shortly thereafter was moved into a room where I had to take all my clothes off, put on an open-in-the-back gown, and was given an IV line with a saline drip. Jules and I watched a couple of episodes of Psych via the Netflix app on my iphone, before I was wheeled away (a humiliating experience) from the second floor to the imaging room on the first basement level.<br />
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From there I had the first CT scan (lying on my back as is normal) to confirm that the abnormality was still there (it was, I'll be calling it a "node" from this point forward) and I had to roll over onto my stomach (exposing my derriere) and had a second scan. I was wearing glasses and when I rolled over I took them off, and they had Julie come in and get them from me (she was in the waiting room across the hall). There were three people in the room (four if you count me), the doctor/surgeon, his nurse/assistant, and the CT tech. The CT tech was doing most of this initial work, giving me breathing instructions for the scans and marking my back with each repeat scan for the location. Once they had the general trajectory the doctor stuck a needle into my back to administer the first local anesthetic. It hurt. <br />
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About 30 second later a second injection which hurt a lot less, but was still uncomfortable as I suspect it went in deeper to anesthetize deep down into the location. I was extremely tense and uncomfortable, and it was about to get a lot worse. Almost immediately after the second shot they began the biopsy, sticking the needle into my back which hurt like hell. Obviously not as bad as without the local, but it was really uncomfortable. It felt like it was the circumference of a straw, but it was probably only slightly larger than a normal shot needle I couldn't see it being on my stomach and all). Once the needle was part way in, they did another scan to (I assume) guide the needle to the node that was being biopsied. Three more times the needle went deeper, followed by a scan. Each time the pain/discomfort was worse. The doctor was on my left (the node being biopsied was on my left flank) and the nurse was on my right stroking my forearm and trying to coo reassuring words. <br />
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After the fourth push and scan they were in position and took two samples. I could hear a loud click as the samples were taken, one after the other. Each time I could feel a sharp cramping in my gut, which still hasn't completely gone away. Before removing the needle the samples were send up to a lap to make sure they were sufficient, and a few minutes later the needle was out and I was bandaged up. Julie was allowed in to see how I was doing (I was whispering to her "that hurt like hell, it still really hurts).<br />
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I had to roll onto my back back onto a gurney and wheeled back to the second floor for recovery. This time I asked if I could walk instead, but they told me I could not. It was about 11 am at this point and I'd had nothing to eat or drink since bedtime. I was starving and thirst, but had to spend two hours in the recovery room before being send home. The nurses there gave me some ginger ale and juice, a few crackers and finally a lunch bag. I ate the crackers and part of the lunch, but it was true to the stereotype, terrible food.<br />
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Anyway a few episodes of Psych later (and a lot of "I can't believe this is happening again") we were on our way home. We picked up Bica from daycare on the way, ate a late lunch at home, and napped. I went to work the following day (Friday) and around noon got the call that the biopsy had tested positive for cancer. I haven't been back to work since, and may not go back until treatment ends.<br />
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All of this week (after a great three day weekend in Philly with Julie & Bica) have been doctors appointments and tests. You always hear people complain about being poked and prodded, now I know what they mean and it's no small complaint. I've had my veins poked by so many needles, had to drink so much barium, had shots full of contrast, been run back and forth through radiation imaging machines, carried around a miniature plastic gas can that was collecting my urine for 24 hours, and have even been injected with radioactive glucose. Today alone I've had an IV port stuck in my arm for hours while I drank a liter of barium, had the afore mentioned radioactive glucose shot into my veins, then spend 35 minutes lying on a bench being imaged from head to toe. That was immediately followed by CT scan of my chest (shot full of contrast for that one). After more than 2 hours at the Sibley Hospital imaging services, I was looking forward to my first food and drink of the day (I'd brought a PB&J and a thermos of coffee), but the bus I take home was at the stop so I hopped on (no eating or drinking on the bus). Just as I got on the doctor called and wanted me to get a pulmonary function test today if possible. I had Julie call to schedule an appointment while I was on the bus, they could get me in in a couple of hours. So I took the bus back to the metro, then took the metro to MD.<br />
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It was an unseasonably warm day today so I sat outside on a park bench in front of Tiffany's in Friendship heights, put a spaghetti western on my cell phone via that Netflix app, and finally ate my sandwich and drank my coffee. It was about 1:15.<br />
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At 2:30 I had my pulmonary test (breathing) to get a baseline as one of the chemo drugs I'll be taking can have an adverse effect on your lungs. My lungs looked great, scored just 2% points shy of 100%, the tech said I could stand to lose a good percentage before being bothered by the drugs (which didn't comfort me, actually).<br />
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I got back home about 3:30, got a few wiggles and kisses from Bica, and then settled onto the couch with a beer to finish that Western I had started on my phone. The home phone got me off the couch though when it started ringing, I have to go to the doctor again tomorrow at 11:30 to get the scoop on my chemo treatment which might start on Monday, the following Monday at the latest.<br />
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I think I'll be shaving my head this weekend. I'm going to feel like Ponyboy from the Outsiders.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-61045676579919683602012-02-18T05:49:00.000-05:002012-02-18T05:49:20.272-05:00The Best Is Yet To ComeThe title of this post is my attempt to be positive, which has been hard these last couple of days as my second follow up scan (6 months after radiation treatment) came back with an abnormality near my left kidney. A follow up CT guided biopsy of that abnormality on my "left flank" tested positive for cancer, so I'm once again looking at cancer treatment.<br />
The type of cancer I've had, pure seminoma, is (I'm told) the most predicatable and easiest to treat of all cancers. It follows a set path and responds well to both chemo and radiation. Which is why when I was first diagnosed in 2010 with testicular cancer I had three options: radiation, single (but big) chemo dose, or observation (no treatment, frequent ct scans). I went with that single big dose of chemo which was supposed to take care of any cancer cells that might still be lingering in my body after surgery.<br />
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Well we all know how that went, my cancer came back a year later but it came back exactly where it should have if it was going to come back. I wasn't happy about this, but it wasn't the end of the world. I knew the cancer could come back, and since it came back where the doctors expected, radiation was still a viable alternative. I did the weeks of radiation which killed off that cancerous node, and also treated the entire area where the cancer might have gone to next. Three months later I had a CT scan that showed me as cancer free.<br />
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But here we are three months after that first CT scan and the cancer has again come back, but this time in an area where no one would ever think to look for it. As the doctor told me on the phone pure seminoma statistically never does this, it always follows a set path.<br />
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Except when it doesn't. Radiation is no longer an option as that would just treat this one node, but they have no idea where else the cancer may have gone. A full on, unpleasant, chemo treatment is now my only option.<br />
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We're going to see the Oncologist on Tuesday. He's a great guy and I really like him, but now I'm no longer sure he'll be the treating physician. I've now been diagnosed with cancer three times in the last three years, two of them statistically should never have happened (and hell even my getting testicular cancer was statistically low). So I'm going to ask this doctor on Tuesday for some recommendations for other specialists (Sloan-Kettering, Mayo, etc. Hell maybe even the Cancer Treatment Center that you always see commercials about). We now know that my case is not normal, and I don't expect these cancer centers to offer up an easier treatment this time around; I've resigned myself to tough chemo. But I need someone to look at the big picture, and to give me some realistic expections of the future. I don't want to hear "we're 99% certain your cured" again.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-41567123311337422402011-11-06T06:42:00.001-05:002011-11-06T06:47:14.332-05:00One Test Down, Rest Of My Life To GoThursday, 11/3/2011 was my first CT scan since finishing radiation treatment on 8/3/2011. I'll get these CT scans every three months for the first year. I was pretty worried about this, I mean, I knew the cancer was almost certainly gone and there shouldn't have been anything to worry about; but that was true this past June when I had my first CT scan after surgery and chemo. But at that June scan the cancer had come back, so naturally I was concerned the same might be true this time.<br />
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Well I needn't have worried. The scan showed the tumor was completely gone and there were no signs of cancer remaining. That's the first time since this ordeal started in June of 2010 that a test has shown I no longer have cancer. It's hard to explain just how that feels to write. Great, obviously, but something deeper than that too. To borrow a phrase from the 1960s hippies, it feels heavy.<br />
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This latest test was at 10 am on a Thursday in Sibley Hospital. At 11 am in the same hospital, just a different building, we had a follow up with the doctor who treated me with radiation (Dr. Sibley, no relation). He opened the scan results on the computer in front of us (the first time any of us had seen these pictures that were just taken) and then he pulled up the images from June and did a side-by-side comparison. One side showing the tumor in my abdomen back in June, the other showing that same location in my abdomen from the photos taken just an hour earlier. The images looked identical, save for the fact that there was a 2 cm mass in the June photo which was missing from the image taken that morning.<br />
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I had planned to go to work after the tests were run, thought I'd be in by 1 pm. Well both Julie and I were feeling pretty emotional, which seems natural to me now. But when I'd made the appointment I thought it would just be relief and then back to work, but like I said in an earlier paragraph it hit me deeper than I'd imagined. So instead of work we went to lunch in our neighborhood, then sat at home on our laptops connected to our offices and worked from home. It wasn't much of a day off I suppose (especially when I had to burn a vacation day, but still billed four hours of work) but I needed to spend the day with woman I love next to me. It was worth it.<br />
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I don't want to get ahead of myself, of course, it's only been three months. I don't expect the cancer to come back, but it has before so I have to accept that it could come back again. I have another CT scan in three months, and then three months after that, and so on. The scan that will be the most worrisome to me (after this first one) will be the one at the 1 year mark, August of 2012. It was 1 year after my original treatment in June of 2010 that the cancer came back (my first CT scan after surgery and chemo). So that 1 year mark is the big hurdle up ahead for me.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-56774439488617112572011-08-13T09:46:00.000-04:002011-08-13T09:46:13.158-04:00FU Cancer, ReduxI've beaten cancer TWICE. How many people get to say that? Well I hope that's the last time I have to mention anything about fighting cancer.<br />
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Treatment ended about 10 or 11 days ago, 8/3 to be exact. After 5 weeks of treatment (two weeks were partial 3 day treatment weeks) it was finally over. On Wednesday, 8/3, I took a nausea pill in the morning before my treatment and never took another. I still felt nauseaus, but I was sick of taking pills and the worst of it subsided by the weekend.<br />
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I'm almost 100% again. Still have a slight metallic taste in my mouth, still a little more tired than usual, and some of the things I've always loved to eat and drink (coffee!) I still don't have a big taste for. But it's all coming back.<br />
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The weekend following my last treatment my dad & his wife came up to visit. It was a very gluttonous weekend including homemade biscuits, homemade cinnamon buns, lots of meals out with desserts... So all of this past week we were making up for it. 5 mile runs everyday but Monday & Friday (2 mile runs those day), pilates after the runs, granola for breakfast, and salads for dinner (no meat, no booze). By the end of the week I felt cleaned out, slimmed down, and a lot more like my old self.<br />
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Next cancer screening isn't until November 3rd. That day will not be fun b/c I'll be so nervous about the results, but at least there won't be any waiting. I get the CT scan run, then about an hour later meet with the doctor to go over the results. Assuming there is no new cancer (FU, Cancer) then it will be another three months before the next scan.<br />
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I probably won't have any updates until November 3rd. I hope I never have to update again.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-59269716207023455542011-07-23T18:17:00.000-04:002011-07-23T18:17:29.400-04:00You Don't Get Points For BraveryMy first radiation treatment didn't begin until mid week on a Wednesday. So that first week I had just three treatments, and then weekend break, before beginning again the following Monday. Three treatments was enough to make me feel puny, but I mostly felt ok. Tired and a little sick, but nothing very severe. <br />
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Each Monday after my treatment I see the dr (the only time I see him during this treatment) and that first Monday (following those first three treatments) the dr asked if I had taken any of the nausea medicine. I replied that I had not, and he said great, then you won't need it. You either feel sick or you don't, it is not cumulative. Well, I corrected, I haven't taken any medicine for the nausea, but I do feel nauseous. Well by all means take it, stated the dr, you don't get points for bravery.<br />
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I didn't correct him, but of course you get points for bravery. Either that, or you don't get points for anything. Has the man never seen Road House ("Pain Don't Hurt")? I'm not a tough guy, I've never been in a real fight in my life. To quote JJ Walker on Good Times, these arms were made for lovin', not fighting. But I still think of myself as a man, and one who knows a thing or two & lives by a certain code. I hold doors open for ladies, return money when someone drops it, help stranded motorists push their car out of the streets (much to Julie's dismay), etc. You get points for those things too, at least in my book you do, and my book is the one that matters to me (well Julie's book too). So accepting cancer treatment and not needing nausea medicine built up points in my book.<br />
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But that same Monday the dr said those words to me, I started taking the medicine. The radiation combined with the hour long bus ride out and back to the hospital is just too much for me. I've lost some points. I now take the medicine at least once a day, often twice (three times is the limit, every 8 hours) and it does take the edge off, although it doesn't remove the nausea all the way.<br />
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By not removing it all the way, I figure I get to keep some of those points.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0tag:blogger.com,1999:blog-4758504882854865770.post-46652117077544062552011-07-18T18:36:00.000-04:002011-07-18T18:36:04.311-04:00Did I Mention I Have Cancer?This update is long overdue, but with treatment in the mornings and then a full work day, I've been exhausted by the time I get home and just don't feel like writing. Then the weekends come and the last thing I want to do is sit at the computer when the weather is so nice. <br />
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Treatment to date:<br />
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Treatments are easy and painless, I've had nine of my 21 when you include treatment this morning. The treatment makes me feel nauseous, and I'm tired all the time, but it isn't terrible (the nausea is by far worse than the fatigue). I also have a nasty metallic taste in my mouth all the time, but it is worse just after the treatment. I miss about 1-2 hours of work each day depending on the start time of the treatments which range from 8:15 am to 9:30 am. Most are at 8:15, so I'm usually at the office by 10 am. At 12:30 I head home and nap for 30 minutes, then back to work.<br />
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The few unusual side effects I have are my super hunger (for foods I normally do not crave), and rash-like itchiness on my legs (not the treatment area). The rash-like itching comes & goes so I can deal with it, but the hunger is all the time. And I'm not hungry for green veggies and fruit. I want ground beef, bean, rice, pizza, french fries. Yesterday (Sunday) Julie & I sat outside with Bica at a local sports bar and had a large order of buffalo wings & two orders of french fries. I ate almost everything. Friday night I got a large spicy meatball pizza with six mini burgers, I barely gave Julie a bite. My appetite is voracious.<br />
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Best Sister Ever:<br />
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My sister sent a care package when I was a week into my treatments which included one of the nicest gifts I've ever received. A note-chain (I don't know the right term for it) where she got well wishes from friends and family, created 21 notes (for each day of my treatment) from those well wishes, and created a looped chain from each note such that each day I break a link in the chain and read that days note. As there are fewer links in the chain, I can see my remaining treatments get lower & lower, plus I get to read all of those well wishes one treatment at a time. It is an amazing gift.<br />
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Subject Line:<br />
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The subject line of this post (did I mention I have cancer?) comes from a TV show Julie and I watch on Hulu called Archer. An adult cartoon sort of about a spy (Archer) and the dysfunctional agency he works for, but really it's just a set up for rude comments and sex jokes. Anyway on Sunday (after the wings-french fry fest described above) we watched the most recently available episode and damn if Archer didn't get cancer (male breast cancer...) and damn if he wasn't saying a lot of things that I've been saying, like "you know I have cancer, right" when Julie tells me to put my clothes away.<br />
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The episode was funny, but maybe hit a little to close to home. Julie & I were laughing pretty hard when we watched it though.Columbo-in-PQhttp://www.blogger.com/profile/15706361285865377823noreply@blogger.com0