Paine and Nurses

Good Morning Chemo 13:

Well it’s a great day to be alive. It’s 0514 and I’m feeling pretty good. My legs feel achy, but that’s okay. I walked the dogs to the park again yesterday and that seemed to go well. I did try to jog for about ten feet and man my legs felt weird. It was as if they had never run anywhere before.

I suspect the running thing is going to be a bit more challenging than I thought. Bring it on baby!! I can’t wait to win this challenge. I am reminded of what Thomas Paine said in 1776, “What we obtain too cheap, we esteem too lightly: it is dearness only that gives every thing its value.”

I was reading Paine’s the Crisis for gazillionth time and it really resonated with me. Remember that time your heart got broken and every song on the radio seemed like it was being played just for you. Well that’s kind of how I felt yesterday reading The Crisis. One section really stuck out. The excerpt in question:

·      THESE are the times that try men's souls … Tyranny, like hell, is not easily conquered; yet we have this consolation with us, that the harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly: it is dearness only that gives every thing its value.

The complete pamphlet is at http://www.ushistory.org/Paine/crisis/singlehtml.htm

I am so thankful to the nurses and staff on 6B/6C and Medical Oncology and Hematology Consultants that it is hard to put into words. Since getting cancer I’ve been to a lot of medical appointments and hospital departments dealing with nurses of different stripes, and while all of them were good competent professionals, the cancer nurses are a breed apart. If Christiana is going to stick the nurses in uniforms, the cancer nurses and staff should have a color all their own signifying their unique dedication and abilities – these guys are the best of the best. I vote for camouflage – I always do.

I guess that’s it for now.

Still have a lot thoughts rolling around in my I can’t quite give voice to yet, but that’s coming.

See ya soon,

Bill

Small Wins

Well this recovery thing is going to be a bit harder than I thought. I was expecting a gentle sloping of ever decreasing side effects with each day a little better than the day before. That’s not exactly how it’s going to be I guess.

I have a runny nose.

I can hear it now. Turn off the lights and get Bill to the hospital – he has a runny nose. Call an ambulance! He will soon join the ranks of the living dead if we don’t get that runny nose under control!

Okay wise guys.  I have discovered, over the past six months, that a runny nose usually means – at least for me – a drop in platelets. Don’t ask me why, but it does. Usually a drop in platelets goes hand-in-hand with a drop in hemoglobin. You know, the component of your blood that carries oxygen. So anyway, I am a bit anxious. I’ve become a crybaby and it’s probably a cold.

Maybe it’s no big deal. I have to go to the doc Monday and I’ll get updated blood numbers then. Who knows, maybe the bone marrow will get off its ass and kick in today and make some blood stuff over the weekend and all will be fine with the world. I sometimes wonder if my bone marrow doesn’t consist of a bunch of fat guys in stained wife beater tee shirts, eating sub sandwiches, and waiting for further guidance. I imagine a lot of recliners being used in my bone marrow.

Remember two weeks ago when I reported I couldn’t walk the dogs 500 meters to the park down the street from my house? Well we walked that same walk yesterday and made it back without sucking wind. I am very optimistic about that. The thing is though my legs weren’t/aren’t back to normal. It was more of a plodding than a smooth walking motion. Even so that’s pretty cool. I was reading this bio of a young woman who was a college cheerleader and after she got cancer, she lost all motor function in her legs. She had to learn to walk all over again. So maybe I’ve got a touch of neuropathy and might need to teach myself to run again. That’s no big deal – especially as the chemo poison dissipates.

On the bright side of the recovery ledger:

·      I have to shave today. I haven’t had two days beard growth to worry about in six months. I am so excited.

·      My taste buds are returning. Things are starting to taste good again. Yesterday I had a Root Beer and it tasted great. I even had some chocolate last night and it didn’t suck

·      My fingers are getting a bit nimbler. I’ve been working on playing “Folsom Prison Blues” on the guitar for some time. It is an easy song, but my hands haven’t worked quite right. Yesterday was the first day my fingers were cooperating when changing chords. Though very simple, I even have the guitar solo down for the song. That’s kind of a big deal. Baby steps you know!!

My plan is to take it easy today. Kate reminded me last night that I’ve only been out of the hospital since Monday and if I push too hard too soon I’ll be right back in. She’s right of course. I’m still dealing with the blood infection that knocked me into the hospital the last time; all things in moderation at this point (except naps).

Talk to you later,

Love to all,

Billy Boy

Recovery Goals

Good Morning:

I was trying to figure out just what the heck my goals should be for this recovery period that started yesterday and it occurs to me that there is a lot of work to be done inside my body. Regardless, this is a short list of goals in no particular order.

1.     Stabilize my blood counts – I’m sure I mentioned this, but for the past six months I have been operating in the ‘SAFE’ zone for blood counts as opposed to normal. For example, I’ve been thrilled to have a platelet count of 50,000; normal is three times that number. It’s the same with all blood numbers. Safe and normal are two different things. There isn’t a whole heck of a lot I can do to affect the blood counts, I just have to be patient and let things heal as the poison dissipates from my body.

2.     Get the straight skinny on this heart ejection fraction and try to fix this without the use of drugs – When I was told about the ejection fraction heart problem I have to admit I sat in the doc’s waiting room and cried like a baby. I think I cried more about the potential heart problem than I did when I go the cancer news. In case you guys forgot, your ejection fraction is how much blood your heart moves with every beat. Normally your heart will eject about 60 to 70 percent of the blood in it each beat. My heart does about 40 percent at least that’s what the echocardiogram showed. That has me a bit freaked out because physical fitness/activity has always been a big part of who I am. I need to schedule that stress test for later next week.

3.     Diet Change – Kate and I have this standing joke that she’ll see me driving down Kirkwood Highway with a Whopper in one hand and a cheese steak in the other as I steer my little red truck with my knees. Yeah I need to fix that. I have an atrocious diet. If you cut me I probably bleed sausage gravy.

4.     Lean Muscle Mass – Yeah I need some of that too. Since this started I’ve dropped about 30 pounds. Much of it was excess weight I needed to lose anyway, but much of it was also lean muscle mass. It has become especially problematic in the past two months as my hospital stays became more frequent and I spent more time in bed atrophying. I took a look at myself in the mirror the other day getting out of the shower and I felt like Kramer did in the Seinfeld episode when he opens a smoking room in his apartment and realizes the smoke is destroying his face. He says, “Don’t look at me. I’m hideous.”

5.     Cardiovascular Conditioning – I need some of that too. I would like to run a marathon or half marathon next summer or fall, right now I can’t run to the bathroom without getting winded. This too depends on heart stuff and blood counts.

6.     Why am I here? – I need to take a good, deep, introspective look at things to figure out what happens next. This is probably the most important step of the recovery. You know, I initially scoffed at the idea that this experience would change me, but you don’t go through this and not come out different on the other side. I’m not sure what that means, but things have changed inside Kate and me and we need to figure that out. There is more to life than …

I guess that’s it for now. I have some appointments to make and big thoughts to think.

Love to all,

Bill

Recovery? Geez now what do I do?

Good Morning Fellow Chemo 13 Gang Members:

Last night was the first night in more than six months that I went to bed and didn’t have some type of catheter sticking out of my chest or arm. It was divine! So divine in fact I slept for nearly 10 hours. I was pooped. I’m still a bit ragged actually.

Kate asked me last night if I intend to keep the blog going now that I am done with chemo. I never gave it much thought, but my first inclination is HELL Yeah!! I may do something crazy like change the background and fix the spelling of the URL, but other than that my plan is to keep going until I get settled back at work in January.

I don’t know what recovery really means, or what is going to happen with the heart ejection fraction, or a host of other things that God will send my way to test or help me. I think sharing these things with you guys and embracing the personal catharsis of putting it into words is valuable – at least for me; I’ll probably bore you to death.

The other thing is there are lessons I can share – hopefully – with other cancer folks who might be kind of lost going through this. I think maybe the blog could be a resource for other folks muddling through. I don’t know maybe that’s my ego talking, but the amount of stuff I’ve learned in the past six months is info I wish I had access to before the first needle prick in my arm.

I guess I’m officially a survivor now. Not quite sure what that means, but I really have to sit back and take stock in next steps.

See ya,

Bill

In the end

My Gang:

After about 150 days of chemo, more than 600 hours of poison dripping into my body, two months (at least in a hospital bed), and an outpouring of love that is as fantastic in its scope as its sincerity – treatment is finally over and the recovery can begin.

As abruptly as the chemo started, it has ended.

At about 1900 last night my doc recommended to Kate and me that we stop the treatments and begin recovery activities. I was sitting up in the bed Kate and the doctor were sitting side-by-side in visitor’s chairs at the foot of the bed. When he said no more chemo, Kate actually danced in her chair.

I was as stunned as you probably are.  But here are the reasons the doc cited:

1.     My cancer is in remission and has been since block #3

2.     The echocardiogram revealed a potential heart problem that could have a chemo related component

3.     The potential risks at this point outweigh the potential benefits

4.     Pounding my body with more of this aggressive chemo we’ve been using is just too risky.

I don’t know what I was expecting, but it surely wasn’t that. I thought we'd adjust some of the chemicals, drive on, and begin round seven today or tomorrow. I couldn’t be happier. If you’ve been following this blog you know what it’s been like. If you haven’t – well, let’s just say it has been a long tough walk to get here.

What does this mean?

In the near term it means another PET/CT scan to make sure the cancer is still in remission; it means finishing the antibiotic therapy for the blood infection; it means going home (today); and it means not overdoing it too soon. It also means getting the PICC line removed from my arm.

In the longer term, I have some physical issues to work through that may go away over time such as the heart thing (known as a low ejection fraction). It might take care of itself, or I might have to take some drugs, but we’ll see. I also have some neuropathy in my arms and legs that I need to deal with.

My body is beat up and I have to get back in some kind of work shape; hell I can’t stay awake for more than two or three hours at a time without fatigue hitting me square in the nose. As supportive as my employer has been, I’m pretty sure bi-hourly naps are a non-starter. Hopefully the lethargy will ease up as the residual chemo dissipates. We’ll see.

I’ll write more tomorrow after I digest it all. But, that’s it for now!!

Love to all,

 Bill

Great day

It could’ve turned out to be a really stinky day, but instead it turned out beautifully. Kate and the nurses on the cancer floor made it one of the best birthday’s I ever had.

It started out simply enough with the nurse practitioner (kind of hybrid nurse/PA/doctor) making me a card. Then my nurse for the day came in and put happy birthday on my dry erase board and drew three balloons – one red, one green, and blue. It was simple, yet beautiful. I loved it. I don’t have my camera because I didn’t expect to be here. So there is no evidence.

The number of hugs I got was inestimable – each one a special little piece of love I’ll carry forever. I really was touched. The nurses on the floor made this beautiful card; they all signed it and gave it to me. One of the nurse’s inflated two purple surgical gloves like balloons and wrote happy birthday on them. They are taped to the top of my IV stand; I call them my “happy birthday udders.”

At about 1300 I turned on some football (life is wonderful) watched the Eagles build a lead they would keep for a change and then carried through with my threat to take a nap at the 2^nd quarter.

When I woke up, I was surrounded by nurses (not a bad way to wake up). About 20 of them were jammed shoulder-to-shoulder in an arc around my bed. For a second I thought I was in an intervention for bad jokes and these were all the people I had offended (then I realized there weren’t enough people).

They gave me a little cake and sang “Happy Birthday.” And then I did something I don’t normally do – I blushed an “aw shucks” blush. It was all really quite beautiful and I will remember it forever.

A little later my bride of 28 years came to visit with a Seasons pepperoni and ham pizza and a strawberry shortcake birthday cake. We watched the Cowboys blow a three-point lead to the Patriots. We sat together – side-by-side – at the foot of the hospital bed, in the room’s visitor chairs, holding hands, and stealing the occasional smooch from each other. It was perfect – truly to become one of those “hey do you remember that time when we …” moments we will share forever.

Although I wouldn’t wish one day of cancer on my worst enemy, yesterday was a day I would wish on anybody.

Peace,

Bill

Happy Birthday To Me

It’s my birthday tra, la, la.

This is going to be a great year too. This is the year I beat cancer, recover from all the chemo, and generally get on with life. It’s gonna be great! Hard work; but great nonetheless.

This is the year I write something, that can make you cry. Remember that old song by David Bowie, “Young Americans” when he sings, “Ain’t there one damn song that can make me break down and cry?” Well, that’s what I want to do. Either that or write a dry history thing about the Battle of Cooch’s Bridge. Either way its gonna be great!

This is the year I finally dedicate myself to finger picking on the guitar and play something really cool and complicated, like Al Stewart’s “Road to Moscow,” or something off Van Morrison’s “Moondance” album. Now that I think of it, something off Johnny Winter’s “Still Alive and Well” might be cool.

Oh yeah and I guess I should work too. But you know there are two ways to approach work. One is working to live and the other is living to work. I spent a lot of years doing the latter and I still have cancer and debt. So maybe it’s time to embrace the former and see what happens. I’d hate to end up leading the remainder of life -- in how does Thoreau say it? – …  a life of quiet desperation and go to the grave with the song still in me (excuse the paraphrase).

This the year I renovate my kitchen or get a new house. I hate my kitchen that much. I have this vision of blue and yellow tiling around the cooking area, counter tops, and backsplashes – A kind of vivid southwestern theme with darker, richer blues and yellows. Every tile would be irregularly shaped; maybe I’d shatter some whole tiles first and work with the shards. I’m not sure I even want the surface of the counter perfectly smooth for that matter.

Now for today –

I’ll spend today luxuriating at Spa de la Christiana Care. I’ll be unreasonable with the doctors and nurses. I’ll watch some football. Then take a long nap or two between the 2^nd and 4^th quarters of the first game. I’ll watch the 2^nd game with bated breath as the Cowboys blow an early lead over the Patriots and go down in flames as Tony Romo throws or fumbles the ball/game away.

Kate and I are gonna have Pizza from Seasons followed by an incredibly delicious strawberry, whipped cream cake from that little bakery in the Belfonte neighborhood of Wilmington. That done, I’ll settle in for some really bad Sunday night TV and waddle to and from the bathroom due to some “I only have myself to blame” self induced diarrhea. It’s gonna be great.

I guess that’s it for now.

Peace.