Tuesday, September 25, 2012
Wednesday, August 1, 2012
We made our introductions and then saw each other (and our wives saw each other) just about every day for the next 2 months. During our initial introductions my wife and I misunderstood his name and thought it was Constantine, and since I didn't ask his permission to use his name on this blog I'll stick with that here. He and I went through some tough times together. Most notably for me was the DVT issues that put me in the hospital as I neared the end of my treatment, and for Constantine it was developing appendicitis while undergoing chemo. We both think the other had it worse.
We've kept in touch via email as things progressed post-chemo, and this past Thursday we all (Constantine, his wife, Julie & I) went out to eat together. We had not known each other socially at all, only medicinally (if that's a word I can use that way), but we had a wonderful time (as well as too much to drink on a work night).
I found out that Constantine and his family referred to me as "The Mentor" and we had a lot of laughs about Julie & I thinking his name was Constantine. We were able to swap post-chemo notes and we've both suffered from the same symptoms, except for the man boob pain. Constantine was happy to note that he was not suffering from that nor did he need to have a mammogram.
It was really an incredibly enjoyable evening, and just fantastic to see someone back in good health who I had watched slowly drift into sickness before my eyes. It really drove home what it must have been like for Julie to watch me go from a healthy, active (youngish) man into the sickly sight I became, as I had to watch the same effect in Constantine.
Conversely I was able to see that once pale, chemo sick man now smiling, healthy, and again enjoying food and drink; just as my family has been able to see that happy return to health in me.
It was a really enjoyable evening, and I hope Constantine and I continue to have a friendship going forward. Julie and I are not always the best about maintaining relationships with our friends, but I really don't want to let this new found friendship drift away.
Wednesday, July 11, 2012
People, today I had a mammogram and a sonogram.
About a month after chemo ended and I started to feel a lot more like myself, I also started to experience numerous small pains and issues. The worst of these which I've had for going on 2 months is a pins & needles like pain in the bottoms of my feet (heels mostly) including numbness. But rather than catalog them all just take my word for it, I've got lots of pains and discomforts which are going to last a while.
This is probably a good time to give a nod to the good folks at TC-Cancer.com, specifically the support forums over there. I never posted, but lurked in the forums often to see if others had experienced any of the same crazy symptoms I've had (or continue to have) throughout my cancer treatment. This was (and continues to be) an invaluable source for me, and I suspect for most men who have had testicular cancer.
Anyway, I won't catalog all of my issues today but I'll tell you about the one that developed about two weeks ago. My left breast, just under the nipple, started feeling sore. Mostly to the touch, I'd notice it when Julie would put her head on my chest as we laid down to go to sleep. A few days of soreness and I was able to feel a lump/bump under the nipple. Pain, lumps, and bumps are the kind of thing that make a cancer survivor turn pale with fear.
So off to the internet I went searching the forums at TC-Cancer.com and sure enough several post-chemo patients had experienced the same thing. Most seemed to think (or their doctors seemed to think) it was related to low testosterone and a symptom of Gynecomastia (look it up folks, then shake your head with pity for me) and that it would get worse, clear up on its own, or require a testosterone gel.
Well I was hoping it would get better, but after a week or so it was still bothering me so I called my oncologist but there were not appointments available for a few weeks, so instead I made an appointment with my general practitioner. That appointment was this afternoon and I went through the catalog of pains with him (the ones I'm sparing you from having to hear about) and he wasn't worried about any of them (his diagnosis matched that of the folks who had experienced similar issues and wrote into the forums at TC-Cancer.com which was comforting, also I'll stop plugging the site now) except the pain in my breast. And that's when he told me "I'm sorry to say this, but you'll have to get a mammogram.
There is a breast-radiology office in the same building as my GP, so I went down there with my order and entered a waiting room filled with women, then walked up to the counter and announced to the check in nurse that I needed to have a mammogram (please see the first paragraph). Not much later I was in a small, private waiting room wearing my suit pants and an open-in-the-front medical gown.
The nurse giving me the mammogram was very nice, the mammogram on the other hand was not. I could use more muscle in my chest, no doubt, but I do not have boobs so she really had to work to get what I do have into the pancake flattening machine. Two images for each boob (even though the right wasn't hurting, they looked at both), squeezing from the top & bottom first, then side to side.
After that I had a sonogram on the left breast by the doctor, which only took seconds before the doc told me I was fine and it was nothing to worry about, just some kind of tissue build up that was of zero concern. Julie was in the waiting room when I came out, I didn't have her come to this appointment (not expecting much to happen) but texted her when the word "mammogram" was first mentioned.
Back to my GP we went, relieved obviously, where my GP told me I almost certainly did not have Gynecomastia (if you didn't look it up yet, that's "man boobs"). Nonetheless he took some blood to check my testosterone levels as well as my thyroid.
So there you have it, another crazy, humiliating, and yet somehow comforting day in the life of a testicular cancer survivor.
Tuesday, June 12, 2012
Tuesday, May 15, 2012
About 10 days ago my left arm began showing signs of the clots again, raised hard veins just before my wrist. I showed them to the doctor at a schedule visit but he thought it was just scar tissue and the continued healing process and nothing to worry about. But over the next few days the raised veins got worse, and began to hurt a little. More troubling my hand began to swell up again, and I could no longer wear my wedding ring or carry heavy groceries in my left hand.
A few more days went by and the pain got significantly worse. Although I had no appointment I went to the doctor again and spoke with the head chemo nurse to see what she recommended. Not treatment wise, but which doctor I should even try to see. Should I stick with my Oncologist? Go to my GP? Or try to see a vascular specialist?
She told me to wait there and she'd get the Oncologist to take a look. It took a few hours before he had free time, but he did eventually come by to see me. I told him I felt like my veins were letting us all down, I didn't want to keep coming by his office but damn the pain was really getting bad. He could easily see the swelling in my hand and the hardened veins again in my forearm.
Concerned, he told me to go back to the blood thinning shots twice a day (not what my stomach, which was only now beginning to recover from weeks of twice a day shots, as I had only a week earlier been allowed to switch to once a day shots), to get an ultrasound on both arms, and that he would set up an appointment for me with a vascular specialist. This was last Monday (5/7), I should add.
On Tuesday I had the ultrasound on my arms. The right arm looked good, the clots were gone and the blood was flowing through the vein again. The walls of the veins were still thicker than usual, but not terribly so and seemed to be headed in the right direction for healing. But the left arm was still in bad shape. The clots had only cleared up about an inch from my elbow. After than inch, they were blocked all the way to my wrist. Thick vein walls and numerous clots could be seen, with no blood flow through those veins.
The following morning (Wednesday) I had the appointment with the vascular specialist whose office was in Bethesda. Julie and I arrived early and discussed all of the questions we'd like to ask, hoping to finally get answers to why I was having this problem with my veins, the treatment options, and (important to me at the time) pain management. I had brought a CD of the two ultrasounds I'd had on my arms, blood test results showing the possibility that I had the lupus inhibitor, and other medical records.
When we were taken back to the exam room I sat nervously waiting, wondering what tests would be run, questions asked. I had rehearsed in my head the narrative of the last few years of my diagnosis and treatments, trying to make it as comprehensive yet succinct enough for this initial exam. I shouldn't have bothered.
The doctor came in and he was a big fellow, full of energy and friendly confidence. I thought this was a good sign. After introductions he quickly moved on to wanting to see my arms, and confirmed what we already knew. He had of course spoken to my oncologist and knew the basics, but didn't seem interested at all in anything other than the last few weeks. What kind of chemo had I received? When had the chemo ended? What medications was I on?
"Oh it hasn't even been two weeks since chemo ended?" He said when I answered his questions. "This is nothing to worry about, it won't kill you and it will go away on its own. Avoid taking NSAIDs (advil, etc.) and otherwise go about your life as you normally would, no exercise or dietary restrictions.
"Well the pain is pretty bad" I explained, "and advil is the one drug that seems to help. Also, does it concern you, the way it does me, that my left arm had gotten better but has now flared up again?" Don't get me wrong, I wanted to believe he was right. But every doctor has first come to my case with a preconceived notion of how things would go. The way it has always gone in previous similar cases, but time after time my case has proven to be different, my body not reacting as the doctors anticipated. I was trying to be a good advocate for myself, as much as I wanted to believe this specialist.
The doctor considered my question for a moment, but then with a somewhat annoyed look shook his head and said "well the clots might not have really gone away the first time, just gone down a little before coming back. Two weeks is nothing, these things can take 8 weeks or more to clear up. It will go away." Then he added "in fact I think putting you on blood thinners was unnecessary, I understand why your doctor did it, but in your case it isn't what I would have done."
That really annoyed me, not because I wanted to stand up for my oncologist, but because this doctor clearly had not seen my earlier ultrasounds or read the reports. The swelling in my arms several weeks ago that put me in the hospital were no small problem, numerous ER doctors, hospital doctors, my GP and of course my oncologist had seen my arms and all thought blood thinners were needed immediately to stop this from becoming a life threatening emergency. I had brought all of that documentation and the ultrasounds with me to this appointment, and offered them up at that moment to the specialist, but he had no interest in reviewing them. After I insisted, I at least got him to review the blood work which had shown the possibility of the lupus inhibitor.
"You don't have the lupus inhibitor," he said confident in his opinion. "This is all because of the chemo, it does crazy things to you and will take a while to work it's way out of your body. In a few months your arms will be better and you'll get back to normal."
Again I wanted to believe him, I wanted to say "Ok, great" and walk out. But I've been down this road so many times now having done just that, only to be back in the doctors office a few months later to hear why a condition that should have been cured had somehow come back.
"Here's the thing, I don't know when I feel certain pains and lumps on other pars of my body if they are just bruises (I bruise easily now on blood thinners) or if they are clots. For instance I had one come up on the back of my thigh this week."
He had me drop my pants and I turned around for him to review it. He rubbed a finger on the spot just above the back of my knee and said "that's a clot, it's running right through a vein." This seemed to throw him. The clots had always been in my arms where the IVs had been placed and the drugs entered my body. But here was a clot far away from that spot, and it was clear he didn't expect this. But he said no more.
"What should I do about that clot?" I asked.
"I'd have your Oncologist look at that one" he said, making it clear to me the appointment was over.
So I put my pants back on and he again said "you'll be fine in a few months, but call me next week and let me know how things are going. As we left we could hear him on the phone with the oncologist, but didn't stick around to eavesdrop. I was annoyed, feeling like he couldn't get us out of there fast enough and that we had wasted our time that morning.
"I'm with a vascular specialist to review my blood clots," I began to complain to Julie as we left the building, "I show him a new clot on my leg, and he tells me to make an appointment with my oncologist?"
I was angry, and I suppose I could have pushed the specialist further, but basically I was through with that guy and knew I'd have to find a new one if I wanted another opinion. But on the flip side I wanted the guy to be right, that this really wasn't anything to worry about and that it would go away on its own. Also, I was in a great deal of pain, the swelling was at its worst that morning and I could hardly bear it. Julie went to work and I went home, where I caved in and took a narcotic pill for the first time since I had quit them after the earlier blood clot experience. I also wrapped my arm in a heating blanked and then laid down on the couch, wondering what the hell was wrong with my body.
I ended up taking more narcotic pills for the pain that night and not doing much. My arm wasn't much better on Thursday but I got up and went for a run with Julie and Bica anyway. We had run each morning that week, although just two miles each day. I needed to get my endurance back up, and with each run my legs and lungs were getting stronger, albeit slowly. I was determined not to fall back on the crutch of narcotics which took the edge off of the pain, but made me sleepy and lethargic, also somewhat depressed. Despite the doctors warning I decided to stick with advil, but tried to only take it once in the morning and once at night. I should note that when I pressed him about that, about how advil offered me the most relief from pain, he did say it was ok to take it just not around the clock.
I also kept the arm wrapped in the heating pad for hours at a time, over my head, which seemed to help quite a bit with the pain while it was heated. But when I would remove the pad the pain would be even worse for about 15 minutes or so, before leveling off becoming tolerable again.
Friday morning my hand looked better. Still swollen but less like a balloon. The veins in my wrist were still hard and painful, but things did appear to be moving in the right direction. Hoping this doctor was right I also switched back to once a day blood thinning shots. My stomach just couldn't take twice a day any longer. Huge black & blue bruises now covered my abdomen, and scar tissue lumps were everywhere. Finding a place for a shot was getting harder and harder, my gut needed a break. I was taking a chance here that the specialist was right and that at this point blood thinners were not as necessary as before. I spent more time walking and that seemed to help the small clot in my leg too.
In fact on Friday Bica and I took a 3-4 mile walk together and although my hand was hurting, it seemed to do a lot of good for the leg clot. I also found several small clots in the tops of my feet, but so far all of these like the clots in my arms were in surface (called "superficial") veins. These are rarely dangerous, and certain while I was on blood thinners, even a reduced dosage, should not be an issue.
Later on Friday we drove out to the beach and that night my arm again began to hurt very much. I kept the heating pad on it for hours and took advil, by the morning my had again seemed better. The rest of the weekend passed that same way, painful in the morning and at night until heat and advil helped to bring it under control.
That's really where things stand. On Monday we extended our morning run by a mile, the first time I'd gone farther than 2 miles in almost 3 months. I also did an hour on the elliptical later that afternoon. Heavy rain this morning kept me from running, but I plan to hit the gym and to try another hour on the elliptical. The low impact on my body, but working out both arms and legs seems to be helping. Long, hot baths and the heating pad offer a good amount of relief to my arm which looks better with each passing day. The hand is still swollen, but looks much better than this time last week. The clot in my thigh and the small ones in my feet are almost completely gone.
So perhaps the specialist was right after all. That's reassuring, but also tells me I may have further relapses with these clots in my arms before all is said and done. It just goes to show how long chemo stays with you, and the crazy things it does to your body. As I talked to one of the other guys recieving the same BEP treatment I was getting we discussed some of the few pros of going through chemo. He'd had a few warts on his hands which had fallen off after his 5th week of treatment. I had suffered from annoying and sometimes painful dermatitis since going through radiation last year, but once chemo started that had cleared up and it hasn't come back yet. If you're going to have to suffer so much through chemo, you might as well get a few side benefits (besides curing your cancer, we hope).
Tuesday, May 1, 2012
Tuesday, April 24, 2012
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.
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.
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.
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).
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.
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).
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.
Thursday, April 19, 2012
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.
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.
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.
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).
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.
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.
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.
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.
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.
Thursday, April 12, 2012
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.
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.
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.
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.
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.
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.
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.
The blood thinner shot, by the way, is given in my belly twice a day. Good times.
Drugs are catching up to me. Time to sleep.
Tuesday, April 3, 2012
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
There's a light at the end of the tunnel.
Wednesday, March 21, 2012
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.
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.
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.
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.
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.
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.
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.
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.
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.
Thursday, March 15, 2012
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...
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.
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.
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.
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.
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.
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.
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.
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.
Tuesday, March 13, 2012
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I don't know how much I'll post again until the next big treatment starts.
Tuesday, March 6, 2012
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
Wednesday, February 29, 2012
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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."
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.
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.
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:
"If you were in Indy for just one night, where would you eat?"
"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."
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.
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.
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.
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.