Wednesday, March 21, 2012

Now I Look Like I Have Cancer

At 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.

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

Now I Feel Like I Have Cancer

Rereading 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.

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

Harder Than You Think

This 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.

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

Only 61 Days To Go

Well 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.

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.