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.