Another Health Scare

OK, just as things are getting better something scarey happens. In the cornern of my neck/ear/jaw, I get this large painful swelling. I figure its an ear infection, because my counts are so low and my ears have been acting up.

So we go to my PCP who checks me out. She's not sure what it is. It's not a regular middle ear infection she says, more like a swimmer's ear, but I can bend the outside flap. She's not sure if maybe we have infllamed the lymph node and salivary gland that are there.

Inflamed? How? Are you just talking infection? Could this be another bought with lymph nodes and cancer. The good news is that the area is hot an painful to the touch which encourages the theory of infection. The bad news is that the word lymph node was used and my doctor said it's not looking like a regular ear infection.

We're doing antibiotoics for a week=10 days. I have an appointment today with my cancer doc Dougherty and Feb 6 with the guru Dr. Weinstein. It's a bit of a scare, but most likely just an infection. It's painful as hell too.

Rolling Along

I continue to feel better and better. Rarely any sickness, maybe once every couple days and it's due to my cold-like symptoms more than any chemo nausea.

I'm hydrating ok and "feeding" well enough, although I lost another 5 pounds this week. That's not good. i'm down to 170, which is about as low as I want to go. Really, I way in at 190-195 pounds when I'm taking care of myself, so that's where I need to get to. I started at 217, yup 47 pounds ago. That weight was my highest ever and the product of indulging in snacks while I could before radiation, etc. It's getting time to get my symptoms out of the way, so I can eat and ensure my way back to 195. Then I can get my stomach tube removed!!!!!! That will be a graduation.

I'm not as tired as I have been, but my white blood counts are real low right now, making infection very easy. So, I'm not shaking hands, kissing, or doing any real public time. I'm a shut in, but that's basically what's been going on for 6 months now. It's been tough, but I can taste a return to normal life.

My dad's been up this week, and it's been nice seeing him. He's heading home soon, but I appreciate his visits, as much to offer my mom some company as the comfort he gives me. Kristina has been her usual angel self. She has tirelessly been there for me throughout this entire ordeal, and it's incredible how she's helped me. Shelly's visits have also been very helpful. All my other friends want to come and are waiting for my ok. I figure as soon as my white counts are back up, I'll be ready for visitors.

Turning the Corner

Well, I feel like I finally turned the corner on my recent bout of chemo hell. I'm not 100% by a long shot, but I feel better, am no longer constantly getting sick, and am getting much more food and water than earlier.

It reminds me of lines from the old Speed Racer theme song:

And when the odds are against him
And there's dangerous work to do
You bet your life Speed Racer will see it through

Like so many guys my age, I idolized Speed Racer way too much. Although, truth be told, I was always more of a Racer X fan. OK, enough nerdery for now.

I wanted to thank everyone for their well-wishing and beams/prayers/thoughts. It made the difference in a rough patch. Hopefully from here it's all up hill.

Soon maybe I'll eat again, be able to speak normally, and quit having to spit every 2 seconds into a bucket, but for now life is much better than it has been, and I'm grateful. Pretty much bald, but grateful.

Oh, and I was amused to see this trailer for a live action version of Speed Racer hitting screens.
http://www.youtube.com/watch?v=tO2jcwgIi8o&feature=related

Still Battling

I'm still battling this tough spell. I can keep down a few cans of Ensure a day now, and am vomiting a lot less frequently and voluminously. Never thought I'd use that v word in a sentence.

My mouth and throat feel like hell, and I'm tired as hell right now. This battle is no fun, but I look at the incremental progress of being able to keep meds down without vomiting them instantly and taking some Ensure vs. none.

I've all but decided on no #6 chemo, and that means if I can tough it through this, I'm reallly through the treatment. In some way, that should make it easier to endure.

I love you all for your support. Keep praying. I'm needing those beams of good thought right now.

Another ER Visit

Last night I made another trip to the ER to deal with chemo illness. I'd been unable to keep anything down and was puking about 10-12 times repeatedly every time I tubed my Ensure or water. the biggest problem is that this creates a viciious cycle of more puking and malnutrition/dehydration. So, you can't let it go.

All the precautions medically, the new drugs and the doctors strategies have not done what I'd hoped and made chemo more bareable for me. Everyone seems like I am having a particularly rough reaction to the chemo and their usual magic wands like Zofran and others for anti-nausea seem to hold no sway.

I am seriously considering letting Chemo #5 be my last chemo and then using the extra time to recover and get ready for work and life. At this point, I've already exceeded the treatments of other nasopharynx patients that I know and my results are good. Honestly, my body just doesn't seem up for another round and I think it's time to let it heal and regenerate without further abuse. I will talk with my docs, but I am leaning heavily this way as of now.

Chemo #5

OK, I'm moving through chemo #5. I've been sick, as was expected, and it's a drag being in this time. However, I know it'll pass and I'll have some peace before my final chemo.

What I haven't posted yet is some tremendous news.

My very respected surgeon, Dr. Greg Weinstein, met with me on Tuesday and was astonished at the progress and results of my treatment. He kept saying you're doing extremely well, and you're going to be ok. He said most people don't see the great results that I have.

Woo-hoo!

Beyond this, he wants to wait three months from now before making a final decision on lymph node dissection in my neck. He said a PET/CT scan will be taken and if it shows cancer, then we'll cut. Otherwise, no need.

It was a great visit, and even though I felt sick because of the chemo, I was elated.

David Cole, Pharmaceutical Sponge

"I think one probably absorbs things like a sponge and things emerge without your always being aware of it."

- Jeremy Northam, British actor (and one of my favorites)

I had chemo today. For those who have never been, it's rather boring really. You get to the place and they draw your blood and test it to make sure you are healthy enough for the treatment. Then they hook you up to a large bag of saline water that drains intravenously into your body over the course of an hour. Then they hook up other bags, smaller usually, with anti-nausea meds, with magnesium (which Cisplatin depletes), and then they give you the money drug. Cisplatin. It's the big anti-cancer standard, and it's platinum-based. Platinum and life-saving. I can only imagine what the dose they put into me cost. Probably even more than the rising price of gas (petrol, to our English friend). Then another big bag of saline and I'm ready for my portable pump filled with 5FU that runs for 5 days pushing this drug into my system.

It generally takes about 5 hours to do this all, and my job is to be a big sponge and suck up the meds. There's no real nausea or pain involved during the taking of the treatment. It's usually a few days after before the anti-nausea drugs are done and the Cisplatin really begins to do its worst on your body. I find the first two weekends after treatment and the week in-between to be the darkest days of the chemo. Here' s when you barf incessantly, feel awful, and just wish it was over. I haven't looked, but you'd probably find few posts from me during these times during my last 4 chemo sessions. The good news is this is #5, and when the 10 days of hell comes it will be my next to last (hopefully ever) chemo treatment.

In the mean time , I had a great day at chemo, and again it was food related. The kind volunteer lady brought my mom a coffee and some Rold's Gold pretzels. My mom ate a few and the bag was lying there so I figured "Why not?" Well, they are hard, dry, and sharp to cut your mouth . . . could have been a wise response. I did the unwise thing and ate the pretzel. It melted in my mouth, and I chewed it very well. It went down without trouble!!!! So, I had a handful of the bastards and they were delicious. I started thinking. Are Doritos possible? Is God showing me how much he truly loves me?

My mom decides to go get some lunch at the nice little sandwich shop in the hospital. She comes back with a turkey and cheese on white with mayo and lettuce for me. And a pack of potato chips. Ruffles, not Doritos, but hey. I try the sandwich, bread and all. It shoots down without trouble!! Life is grand. Like I said when I ate that sandwhich, I felt like I was coming home. I ate most of the potato chips (again for the Englander, crisps). They were awesome and no trouble to eat. I also drank a peach smoothie and drank a couple cups of apple juice during my treatment. Two weeks ago, I never would have believed I would be eating this well this soon.

So, I decided to be bold and try a burger and fries for dinner. Wendy's has pretty greasy burgers, which is good for me and my saliva-challenged mouth. I can order them without acidic trouble makers like onions, catsup, and mustard. I wanted to try fries after the chips, too. (My English friends must be furious now. Chips=crisps, fries=chips). In any case, I gave it a go and the fries were so hard to eat. They were too dry. I put catsup on them, and the acidity hurt my mouth. The burger was a little better, but after eating maybe half, I had to give up. A little dry, and the little catsup I used was burning me too much. Oh well. I'll try it again in the future and some day re-add that to the menu.

In the mean time, I had a good day. My stomach is a little upset now, and I'm starting to feel the chemo a little (heart burn and fatigue). I'm still trying to go to a viewing tonight for a good friend's dad. Afterwards, I will really sleep like a champ, I'm sure.

"How little do we know that which we are!

How less what we may be!"

- Lord Bryon, Don Juan

So, here's the deal with the picture. I took it to show my swollen lymph nodes in my neck, back in August. Right now, there's nothing there!

The past few days have been great. Energy has been relatively high and I started pre-production work on a play that I can hopefully still direct for May 2008 with our community theater. The company signed me to direct it last March or so, before cancer was known. They may be pinch-hitting for me at some of the early rehearsals, read-through, etc., depending upon how I'm doing.

Honestly, I love having a little something that can keep my mind and typing fingers busy. I'm using this as therapy for getting back to my job at Prudential, too. Right now, I can work for about 30-45 minutes at a clip and then get exhausted. Hopefully with more practice, I can get myself up to a full day. I really miss Prudential.

I've been eating more and more. I now try to eat by mouth at every meal, even though 90% of my food is still through my stomach tube. Today, I have eaten (by mouth) 1100 calories through lunch time, and taken none by feeding tube. It's exciting.

I am trying to get well, and getting myself back in order. It's hard and takes work, but I want to get well and get my life back.

Latest Doc Visit

I had my latest visit with Dr. Dougherty at Doylestown Hospital. She is a caring doctor and I like her. My mother came with me as usual. I have to say my mom is a huge asset in my recovery. Not only is she selflessly here to help me with feedings, medicine, dressing changes, and the like, she is there to take me to the doc. When we're there, her medical background and ability to gain the respect of other nurses and docs helps immensely. She's a great advocate for me and I treasure the help she's been providing.

Yesterday, Dr. Dougherty said I look good to go for next Monday's follow-up chemo #2. My counts are ok, liver functioning ok, no appreciable increase in hearing loss, and blood counts seem ok to proceed. She also did a feel of my throat to check my lymph nodes and says she can't feel a lump. The only possible thing she detected is near my obvious scar tissue from biopsy #1 done in Warminster. At most, she said anything there is smaller than a pea.

This is very likely to be residual necrotic tissue, if its not scar tissue from the first biopsy, so I expect Dr. Weinstein will forego a recommedation for surgery. I also expect he'll want to do some testing before making a recommendation, but we'll see.

In any case, it's good the lump is either gone or virtually indetectable now.

The next round of chemo is set for Monday and I hope it goes smoother than the last. We have some good plans for proactive hydration and anti-nausea meds, so I think we'll fair ok. It's just tough business and time to put my game face on.

This is a fight for life, and I never lose sight of that, or all I have to win for. Sadly, a few family family members of a good friend have recently been taken by cancer, and that reminds me how there's no guarantee this treatment will succeed. I've never understood so well how much I love life.

"The future is unwritten."
- Joe Strummer, Punk Rock Warlord

Can't Keep a Good Shaolin Monk Down

I'm battling back and getting and feeling better. One thing that helped was our traditional New Year's dinner. Every January 1, for as long as I can remember my family has done the same thing for dinner. You see, my father grew up in a predominantly Polish neighborhood and worked in a local meat place where they did kielbasa and everything. So, some customs must have rubbed off and blended with those of his German grandmother, because every New Year's we prepare a feast of kielbasa, sauer kraut, German roast pork and mashed potatoes. Inside the sauerkraut, we place a cleaned dime. Whoever finds this token when dishing out their portion is supposed to enjoy good luck and prosperity through the year. My mom skipped the dime this year, but I like to think I was a shoe-in to find it this year anyway.

I ate a few spoonfuls of heavily buttered mashed potatoes, two small slices of kielbasa, and a few bits of pork. Yes, solid food. Meat! It's just a matter of time, baby!

On another topic, my impending baldness. Seamus, in comments, mentioned an old plan friends and I had to get me a pimp hat. However, I am going a whole other direction. Instead of hiding my baldness with shame (and there's little more shameful clothing than a pimp hat), I'm going to display with proud Shaolin style!

Happy New Year

Since my last post, I have not gotten sick and my energy and focus has been a little better. My hair loss has slowed, but it's still shedding.

I think I'm doing better, and that's good enough for me right now.

My New Year's resolutions are simple:

1. Be nicer to everyone I know, and those I don't.
2. Stay focused on getting better and what I can versus can't do!
3. Remember all the kindness and love I've been shown during my treatments, so when I'm better I will have really benefitted from this trial.

Well, I'm going to go fix some soup and maybe drink some diet ginger ale.

Best wishes for the New Year, everyone!