What Would Lenny Skutnik Do?

I'm back in the chair this week for my final hell week of chemo. My veins are almost healed, but still some tightness and puffiness in the veins. But the doc thought I could continue so yesterday I started again. It was a long day, chemo went until 5 pm. Nausea started up almost immediately.

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.

Breaking Up Is Hard To Do

After a little more than a week the pain & discomfort of the clots is finally starting to dissipate.  The arms are much improved, from what they were last week when I had to go to the hospital.  Swelling is down in my left arm, and the hard veins in both arms are starting to soften up.

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.

Complications

This blog post is coming to you live from GW Hospital via my iPhone. Expect lots of grammatical errors and randomly wrong words as the auto spell correct makes mistakes I dont catch. I'm also several morphine injections and percosets into the evening which won't help matters.

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.

Hell Week

I thought maybe I should start out with some good news for a change.  I have survived the second of three hell weeks, where I get chemo Monday through Friday for about 7 hours a day.  It was a rough week, but it's over and now I get a 6 days to recuperate before receiving chemo again on Monday.

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.

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.

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.

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.