Monday, October 29, 2007
I'm pooped but still standing. Three or four additional chemicals are flowing through my veins and arteries. They will help me live and I'm glad they're doing their thing in there. (All three; not bad, eh?)
And as for Dr. Z. He liked my post about his iPhone, though he thought I took some cheap shots at Mac computers. Daughter Kim, a Windows supporter, even called them a bit "snarky."
Really, though. Macs are beautiful machines. They look cool, they have a neat interface and in spite of gobbling up tons of memory needlessly they really do zip along. So, Doc, here's to you and your Macs. May they catch up to Windows machines in my lifetime, and may it be a very long lifetime thanks to you. Amen.
It is about 3 p.m. and Kim and I have been at one doctor's office or another since about 8:30 a.m.
I've had my radiation, a visit with Dr. Diamond's physician assistant, gave blood to the vampires at Dr. Z's office, got the results (wow, they're good!) and now am being infused with a couple of cocktails of chemo before I'm reconnected to my chemo pump. I think there's one more chemo punch to go before the pump is hooked back in. I'm even blogging as this is going on (and Kim shot a picture of me typing this very blog item, which is above).
I'm not feeling sick at all, but that might be because the first medication they dripped into me was the anti-nausea medicine. I'm grateful for that. Actually had a decent lunch of chicken noodle soup and a grilled cheese sandwich, plus some sweet potato fries that Kim and I shared. Mmm mmm good.
As I noted earlier, my white blood count was really good. It went from 4 last week to more than 6 today. I'm no doc but I think maybe it was because I was feeling ill earlier, the result of Catherine's bronchitis or pneumonia or whatever it was. In either event several key numbers were up and others were down. But overall, Dr. Z said he's pleased -- and somewhat surprised -- that my numbers are holding up so well. I just hope this bodes well for my efforts to eradicate the cancer in my body. I know it will!
Sunday, October 28, 2007
He went through a treatment program similar, though not identical, to the one I'm undergoing. He had seven weeks of radiation and two major chemo treatments, but he was hooked to the chemo pump three days a week, not 24/7 as I am enjoying. Initially, his docs put his chances at survival at about 15 percent. So he's surely beaten the odds already.
Steve is upbeat and was throughout his treatment. He told me a bit about his regimen. His chemo caused severe mouth sores; thankfully that has not happened to me. Tips from friends and doctors might have helped in that regard. His feeding tube fell out once after about 90 days and he had two hours to have it replaced before another surgery would be needed. Whew!
Since his surgery, at about the same location as my tumor, one of the most severe issues he's confronted is acid reflux-type problems. He's solved that with a recliner in the bedroom.
He said the surgery is weird but works, and, as he pointed out often, he's alive. So it's worth the sacrifice. His surgery was done down the throat, which he said was awkward. Other surgeries are done through incisions from the side. Not sure what the docs have in store for me. I'll ask tomorrow.
Steven said he thinks he survived for two reasons: His attitude and so he can help others, as he has done with me.
If anyone would like to contact Steven, his email is email@example.com, and he's happy to hear from anyone who writes. Steven is a techno-compu-kinda guy. He also rides a motorcycle and lives up near Detroit. But most of all, he is a CancerVivor; I'm still a future CancerVivor.
But like I told him, I will survive. Count on it.
So I start my day early tomorrow, first going for radiation about 45 minutes early, then rushing from the Winter Park office to Orlando for the chemo.
Can hardly wait. Thankfully, daughter Kim will hang out with me, and we'll have this laptop as well as a few books and games to eat away at the time (thanks Karen Saunders for the Scrabble game and the puzzles book; they'll come in handy once again!!!).
Days like this, Nutren 1.5 with Fiber and artificial vanilla flavoring doesn't sound half bad.
Saturday, October 27, 2007
Not that that's a bad thing.
The past day or so I've been doing a lot of sleeping and helping Catherine get better. It seems to be working. She can actually speak now, which she couldn't for a couple of days. (I know, a great opportunity for jokes about keeping the wife quiet and all, but I'll pass.)
Today she and I were well enough to shop at the mall for a dress for Catherine to wear to daughter Jennifer's wedding in December. She found a nice dress and it will be great for her to wear to the wedding.
Meanwhile, daughter Aimee and boyfriend Luis visited Mom today in South Florida. They said she's looking good and was pretty wide-eyed and aware of all that's been going on around her. Which is good news. If she can stay off the vent when they remove it -- possibly Monday -- then she likely will be able to go to rehab and escape in time for the wedding. But I don't want to count my chickens, so to speak. We'll take that road one day at a time. (Was that paragraph cliche city or what?)
On Monday, I go to Dr. Z's office for a full day of chemo treatments; I can hardly wait.
But that will be the second and final such full-day infusions. Whew! Then, another 3 1/2 weeks of chemo and rads and I get to rest from this stuff. Believe me, I sure won't miss being attached to this chemo pump.
I will blog from the all-day chemo marathon, and will likely add something -- even if it's ala Seinfeld, something about nothing.
Thursday, October 25, 2007
She caught me up on her European vacation and cruise and even had some tidbits of gossip to pass along, though most of those already have appeared on the Newsroom Briefing. She has good insider info; still a reporter digging for stories, I guess.
Earlier I had my radiation and second weekly X-ray to ensure all my organs are in about the same place so the targeting tattoos are still accurate.
Today also was a day of turn-arounds. I became Catherine's caregiver for a few hours today; she's sick with a nasty bug that likely is bronchitis but could be pneumonia. I think we're both hoping it's the former. She's in her second day of antibiotics so I think she's no longer contagious. Hope so, anyway. We've been keeping away from each other for a couple of days, and using Purell and Lysol spray when we are nearby. Thankfully, my immune system is still working, though the white blood count might be borderline by Monday if the trend in its decline continues.
I've been meaning to scan and post those blood counts but, frankly, been too tired to bother. So I haven't. I guess that's a decent excuse.
Wednesday, October 24, 2007
She asks me why...I'm just a hairy guy
I'm hairy noon and night; Hair that's a fright.
I'm hairy high and low,
Don't ask me why; don't know!
It's not for lack of bread
Like the Grateful Dead; darling
Gimme a head with hair, long beautiful hair
Shining, gleaming, steaming, flaxen, waxen
Give me down to there, hair!
Shoulder length, longer (hair!)
Here baby, there mama, Everywhere daddy daddy
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
Let it fly in the breeze and get caught in the trees
Give a home to the fleas in my hair
A home for fleas, a hive for bees
A nest for birds, there ain't no words
For the beauty, the splendor, the wonder of my
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
I want it long, straight, curly, fuzzy
Snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining
Gleaming, steaming, flaxen, waxen
Knotted, polka-dotted; Twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled and spaghettied!
O-oh, Say can you see my eyes if you can,
Then my hair's too short!
Down to here, down to there,
Down to there, down to where
It stops by itself!
doo doo doo doo doot-doot doo doo doot
They'll be ga-ga at the go-go
When they see me in my toga
My toga made of blond, brilliantined, Biblical hair
My hair like Jesus wore it
Hallelujah I adore it
Hallelujah Mary loved her son
Why don't my Mother love me?
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
The theory behind chemo is the chemicals target cells that reproduce a lot. This includes hair, some skin cells, blood -- and, of course, the highly reproductive cancer cells. That's why folks on chemo lose their hair, or, like me, shave their hair beforehand to retain some control. So the fact it's not really growing back means the chemo is working in my body the way it is supposed to work.
It's also why I get so tire so easily. Blood cells carry the oxygen and energy the body needs.
I am glad that I shave my head. It's making days like this a lot easier, I guess.
This coming Monday I get my second full day of chemo treatment. I believe it also is the final such treatment. I'll be there starting about 9:45 a.m. and it should last about four to five hours. I'll have the laptop there and will blog.
I think I still feel remarkably well considering what's going on. Much better than I expected at this point in my treatment.
I am still eating, so Nutren 1.5 with fiber and artificially flavored with something resembling vanilla will just have to wait. Darn.
Tuesday, October 23, 2007
So, I didn't. I slept.
Sleep really helped. I finally arose and had a late lunch: Some of the yummy brisket at matzo ball soup provided by the Shaws a couple of days ago. It was still wonderful.
Well, time for a nap.
Monday, October 22, 2007
Dr. Z shows off his totally cool, wired (er, well, wireless, actually) and blogalicious iPhone at today's exam. Oh, also, my numbers are holding their own.
The good doctor loves all things Mac. And while that's not my cup of antioxidant-laden tea, he's pretty steadfast that spending too much for a Mac is a good thing. Who can argue with logic like that? Not I. Don't have the energy for it.
So I posted this totally sincere, totally contrite entry to show Dr. Z that his phone really is cool. In a good way. Very totally cool.
As for my numbers, they're holding their own, somewhat. Some are falling, at a slightly more rapid rate than before, but most are still above what would be considered bad.
Dr. Z said this is because my bone marrow is doing a good job. Whew. I guess my bone marrow is blogalicious, too.
So, is blogalicious a real word? I don't know. Maybe the folks at Florida Hospital's PR department -- who apparently do read this space -- can let me know.
Sunday, October 21, 2007
I'm glad you're stopping by and I hope the blog is helping someone. Remember, its goal is to raise awareness in general about cancer and positive thinking in the face of adversity as well as the specifics of this cancer of the esophagus and the fact that heartburn can cause cancer.
Please get a check-up, an endoscopic exam or at least a consultation. If you feel you're a candidate for this, take care of it before it goes too far. Look at me, turn and run in the opposite direction. I didn't know I needed to have this examined 10 years ago. Now is your chance to avoid this horror in ... well, 2010, or beyond.
They also brought two books for me to read, both inspirational tales of beating the odds, medically and otherwise.
It was good seeing a colleague from work outside of work, just a bummer it was under these circumstances. Though Judy convinced me these circumstances aren't as bleak as I sometimes see them. She has a story of her own about overcoming adversity and what some would say are insurmountable obstacles. But those will be for another time.
And we're already wearing the Livestrong bracelets they shared.
Good people; good friends, for sure.
Thanks, you two!
ADDENDUM: Catherine, Kim and I sampled Judy's brisket and soup for an early dinner -- everything's early these days -- and Oh My God. Everything was perfect. So good, so wonderful I dare not mention them to my mom next time I see her because until now I'd never found a brisket quite as good as her's -- mine or Catherine's included. Seriously, thank you sooooo much. The visit truly made the day, and the brisket and soup really capped it off.
Dick, who has overcome several serious medical issues that began in the mid-90s after he was attacked at a New York ATM -- such as two strokes and major back surgery -- told me that if he could survive all the bumps he's driven over in the past decade so could I. Elaine emphasized, "We will beat this."
Dick was shocked to learn about my medical condition but confident I'll overcome this obstacle, as he so successfully has done with his uphill battles.
He had Elaine at his side every step of the way. I have Catherine, who truly is an amazing woman in her own right.
With encouragement from friends and support from this family I don't think I'll have too rough a time ahead.
Saturday, October 20, 2007
The Livestrong Survivorship Notebook has all kinds of resources and is available from the group's Web site at www.livestrong.org. I did have to use the www. I'm not being paid to send people to this site, but I think it's worthwhile. Further, the book is free but shipping costs about $10. So it's really not free, free. But it appears worth it.
The book was first presented at the new-patient orientation Catherine, Kim and I attended the other day. Oncology social worker Katie Noble pointed out its various elements and convinced me it was a worthy investment. She wasn't wrong.
Check it out online and see for yourself, or stop by and I'll show you mine.
I yearn to get back on the deck of our little sailboat and hit a lake or waterway. But I can't. The sun isn't good for me.
I'd love to hit the beach. Again, the sun.
A theme park; a roller coaster. The sun. These additions to my body. The nausea I'd expect. Not a pretty sight.
So I'm relegated to the inside of my house except for the occasional escapes to a mall or a movie or a restaurant.
But I know that soon these will be luxuries I won't be able to enjoy; I'll be too darned tired. A friend, from whom I've already shared tips on slogging through chemo or radiation, said it will hit in a big way. So I know what's in store, just not when.
But each day, it seems as if that when is much, much closer.
Friday, October 19, 2007
But here's a natural recipe he sent to help with the nausea. I mentioned it the other night in the group meeting for new cancer patients but didn't have it with me. So here goes:
Natural Ginger Ale
1 teaspoon fresh ginger rhizome, thinly sliced (or ½ teaspoon powdered ginger)
1 teaspoon red raspberry leaves
3 cups water
1 cup carbonated water
1 lemon slice
Bring the herbs and plain water to a boil, then turn the heat down and simmer for 5 minutes. Remove from heat, and steep an additional 10 minutes. Strain out herbs. Add carbonated water and lemon just before serving. Drink as much as desired.
Enjoy, and thanks Cuz.
Physically, I have a few new adornments to my body -- remember, I am Keith of Borg. I have this medi-port in my right shoulder-chest area. I have a stomach feeding tube for when that is necessary. And I have a small pump that injects small amounts of poisons into my blood each minute of each day to kill cancer cells.
Emotionally, I'm often fine but on occasion I become a wreck. I try to focus on the positive and look for such items to focus on. My wife, my kids, my friends, my colleagues, my career. There's a lot there, something for which I am thankful. But sometimes I just consider the enormity of the situation and just collapse into my chair. It's a tall order, like racing by foot up the Statue of Liberty, and I'm still just at the bottom of the base. I know I can do it. I think I can do it. I want to do it. I must do it.
But will I? That's one of the areas into which I ponder from time to time. I have a lot going for me. Even the doctors say this. But. But I have this tumor in my esophagus, and it's only going to disappear because these amazing men and women in white jackets with name tags and thermometers and the like are either injecting me, irradiating me or in the future using knives and extricating it from me.
Each day, I grow a bit more tired a bit earlier. I can't quite move as quickly as the day before. I type a few more errors into the blog and rely more on the spell-check program to catch them. But it's OK. Because in a few months, hopefully, I'll be back on my feet and back at work.
Thursday, October 18, 2007
She went to check out the sticker in the framed photo of the Diamonds and the Bushes. But, alas, it was not there. Rather, the good doctor had relegated it to a new task: Coffee cup coaster.
Wednesday, October 17, 2007
Katie Noble is the Cancer Institute's social worker in Winter Park and has handled much of the paperwork for me regarding my short-term disability. She also was the third speaker Wednesday evening in a four-hour new-patient orientation group at the Winter Park facility.
Earlier we heard from nurse Laurie about the specifics of cancer and one's body. And we heard from a dietitian about eating healthy meals and even how to make milkshakes or smoothies from the ever-famous Nutren 1.5. Mmmm.
For example, I finally learned why I need to avoid my favorite diet Lipton White or Green Tea. After all, they're emboldened with antioxidents and, in theory, healthy for you. For you, yes. For me, not as much right now.
Turns out the chemo and rads I'm receiving are oxidents. They kill the cancer cells by oxidizing them. So, when I drink or eat something with extra antioxidents, those good things protect the body's good cells as well as the bad, evil cancer cells. And we don't want anything protecting the bad cells. After all, that's the point of all this crap attached to my body, right?
So antioxidents in foods are good, but items that supplement them aren't as good right now. Gimme a few months, maybe.
So some good lessons were learned at the group discussion. And some good people were there, who all will remain anonymous here. But let me just say it was a pleasure meeting them all and I hope the class gave them the strength, knowledge and encouragement to fight hard for either themselves or their spouses.
Then we all get to meet one another over a meal of some sorts. Those of us who can eat, anyway. Thankfully I am not using the feeding tube just yet; boy would that be awkward.
I wonder if this violates any HIPAA rules regarding patient privacy? I doubt it.
I'll provided photos and a synopsis of what it's all about this evening. But stay tuned for the thrills that I'm sure we're all in for.
Tech Sarah in the radiation control room.
I met Sarah for the first time today during my radiation treatment. She said she'd been on vacation during my start. It was a friendly start to a relationship that'll last at least six weeks.
See, Dr. Diamond is the man who, when asked last week if he voted for the current president, replied ala any good voter in Flori-Duh of 2000, "Nine times."
So he accepted this little bumper sticker with a smile, a handshake and a pen for me to sign and date it. He then surprised the heck out of me. He took the bumper sticker and placed it in the frame in his office holding a photo of the good doctor and his bride shaking hands with the good president, Dubya, and his wife Laura. "It was at the White House Hanukkah Party" a few years ago, he told me.
So the man can take a joke and turn it into a gracious moment. Gotta admire that.
Tuesday, October 16, 2007
The stomach G-tube, as it is called, is much more comfortable now. And though it leaks, on occasion, there are ways to minimize problems. Some tips from the nurses who handle such things: Small elastic medical gloves contain any of the seepage. A plastic clamp. Even a custom necklace that can hook to the thing to keep it above the opening. Not bad.
Stitches also were removed from an incision used to place the "port" and that also went smoothly.
So now I am poised to fight the great fight; to do battle with a microscopic enemy I didn't even know had invaded my body until a month ago, or less. I know I will win this war. Losing is not an option.
My form, which hits the lower esophagus, is caused primarily by acid reflux, GERD and the like. But I haven't had heartburn since leaving a previous job in the Tampa Bay area more than eight years ago. Truly, heartburn pain ended when I joined the staff at the Orlando Sentinel. Coincidence? Until recently I thought not.
Now I know that's not the case. I thought it was a new job, less stress, creative workplace all added up to an end to my dependence on the high-tech pills of the day, Extra Strength Tums.
But it turns out the heartburn probably went away because my lower esophagus was one in transition. Barrett's esophagus is the result of long-term acid reflux and heartburn. Basically, the acids force the esophagus to fight back, and it does so by defending itself with changes to its cell structure. It takes on some characteristics of a stomach lining. And these changes can lead to cancer of that region.
So had I known I was still having heartburn I probably would have taken action years ago. Rather, I found out there was a problem this past summer during a trip out West. And I was diagnosed just a few weeks ago, after having an endoscopic exam.
(Another form of the disease affects mostly the upper esophagus, and it mainly is caused by the one-two self-inflicted punches of heavy smoking and heavy drinking. This form also can cause other problems further downstream in the gastro-intestinal tract, so if you do a lot of either my uneducated advice is to quit both, or at least cut back on both and cut out one. But enough preaching.)
I also would like to encourage you to seek medical advice if you have long-term heartburn, if you take a bunch of Tums or the like, if you recently lost the sensation of heartburn after a lengthy problem, or if you are having a difficult time swallowing foods that you normally could swallow.
Again, I'm no doc, but esophageal cancer is one of the fastest-growing forms of cancer. Here are some current numbers from the American Cancer Society:
- About 15,600 people will be told they have esophageal cancer this year.
- About 14,000 Americans will die of esophageal cancer this year. Because the cancer is usually found at an advanced stage, most people who have it will die of it. An advanced stage of the cancer means it has spread to places far from the esophagus. And that makes it harder to treat.
- Men are about three times more likely to get esophageal cancer than women.
- African-American people are more likely to get esophageal cancer than Caucasian people.
- Survival rates are improving. During the early 1960s, only 4% of white people and 1% of African-Americans with esophageal cancer lived 5 years after finding out they had it. Now, 16% of white patients, and 9% of African-American patients live 5 years after diagnosis.
OK, so some of those stats are grim. But there is good news. The team of doctors who are treating me, Dr. Z and Dr. Diamond, were part of a lengthy study run out of a Tennessee hospital with very promising results. So promising, in fact, that the treatment -- even before its publication in any major national doctors' mag, has become the default form of treatment. Survivability has increased to the upper 70 percents for one year out and mid-40s long-term.
I plan to be among the surviving 40 percent types. And I have a halfway decent chance. That's because I don't have any other major medical issues to deal with, which many of the overall study group patients did. I'm younger than most, at 47, OK almost 48. And my cancer has not spread.
I alluded to this in one of my early entries. I made fun of the fact I've lowered the bar for good news that now good news consists of having cancer, requiring seven weeks of chemo, seven weeks of radiation and then, very likely, surgery and six weeks or so to recover. Woo hoo. But both docs said that is good news. Because the cancer didn't reach the lymph nodes, didn't reach any other organ in my body. If that remains true after the chemo and rads, my chances go up that I will be a cancer survivor. I see no other option. It simply must remain true.
So, that's what I can tell you about my condition and a little about me. In future blog posts I'll do mini biographies of the doctors treating me and maybe some of the nurses if they're game. I have a brief copy of the unpublished study, which I'll type in, and I'll also scan in some of my blood work reports so you can see how they're holding up.
If I'm posting too much information, let me know. I'll ratchet back some. I promise if I mention nausea I won't get into too many details. That'd be tmi, in my humble opinion.
Well, I'm off to the radiation, so I'll update later.
But I do promise that I will fight this thing -- sadly, to the death if necessary.
Monday, October 15, 2007
During my afternoon visit with Dr. Lee Zehngebot, my primo oncologist, I found out that he did, in fact read the note I sent back last week with the address to this blog. He said -- and showed me -- that he has checked it out regularly and held up his iPhone after linking to the site. Too cool. (Those who know me know I'm not a Mac/Apple/iAnything fan, but it was cool!)
So he really made my day when he showed me that he had it bookmarked. He's a good guy and I think he knows that's how so many of his patients and former patients feel.
As a matter of fact, since I began this blog Oct. 1, some 1,001 (as of this moment, 4:07 p.m.) people have stopped by to check out what I'm plunking down here. Hope you've found it useful, worthwhile, educational, informative, helpful, addictive (like a train wreck, I guess) and, at times, humorous.
Back to Dr. Z, who said my numbers still look good, that the white blood, red blood, hemoglobin, etc., were all in fine shape. Which means, he said, "they will plummet" when they fall. It won't be gradual. I'm ready, and told him I've already pointed out to the gang, such as Karen, that he warned earlier that I likely will be in the hospital in a few weeks. Not that I'm looking forward it, but I'm ready.
I also had my pump replenished and it was re-plugged into my "port" on my right shoulder. So far all the processes are working the way they're supposed to. Whew!
Earlier, I had my radiation, Day 3, and that went well. The way it works is I go into the room, get zapped once for 12 seconds from above, then twice more for about 6 seconds each from below the table.
Dr. David Diamond, the outstanding radiologist treating my disease, and I had a few more jokes. He's still stunned to find a liberal Jew. I told him I am not alone. Look in Hollywood, New York, South Florida. I told him I'm shocked to find such a conservative Jewish doctor. (No, we're not playing stereotypes, here, but it was interesting.) He grew up in the Midwest, which, I guess, was his way of explaining why the "L" word is so bad. He claims now to be a moderate. I believe him. He doesn't like Rush or other right-wing demagogues, so he must have some good within.
Dr. Diamond said I'm looking good. I mean, considering.
I'm actually glad I was able to meet and get to know these two fine doctors. They're good people, and I wish the circumstances surrounding our relationships were different. The way I see it, a few months and it will be different.
Sunday, October 14, 2007
So if I do start to glow in the dark it might not be from the rads I'm getting five mornings a week.
It's more likely to come from the diagnostic tests I receive.
ADDENDUM: Dr. Z, the oncologist, has told me that CT scans are still pretty darn safe. He read about my dilemma on the blog and said he saw the story reporting on possible cancer problems. So until he warns me otherwise I'll still do the CT scans when asked by my medical saviors. You should talk to your doctors about it if there are any concerns, too. It only makes sense.
But, she is improving, the doctor said. He actually seemed pleased with her progress, which I hadn't really seen in him yet.
Mom was lucid, joking at times, a bit loopy at times still, and very communicative. But most importantly, she was breathing. Mostly on her own. Today, Sunday, she'll be breathing without the aid of the respirator. Pretty much where she was before the pneumonia attacked her lungs a month ago.
So it was a good visit, though probably my last trip there for a while. I decided to go this one more time because my blood counts remain pretty well and I feel good. I took extra precautions against picking up any bugs at the hospital and am glad I went down to Lauderdale.
I'm also glad daughter Aimee traveled with me. She handled the driving and provided good company.
It was a challenge keeping my bald head, chemo pump and G-tube hidden, but I managed.
I will talk to mom when she's better able to handle the news and when her focus can move to the survival of someone other than herself. Right now I want that to be her primary concern.
Friday, October 12, 2007
I think this really puts my circumstance into perspective. I am dependent for survival upon artificial ingredients, chemicals, machines, syringes, invisible light waves, doctors, nurses, gauze pads and about anything else one can stuff into a medical supply company.
Not that I'm complaining exactly. I don't mind survival. It's a good thing. But to a large degree I am helpless on my own, and I hate that. I like being in control of my life and knowing what comes next. Right now I know what comes, say, tomorrow, next week. But the next stage in my life is way out of my control. It is up to about a dozen, give or take, highly talented individuals who are managing my medical case. Doctors, techs, nurses, assistants, and the like. Good people. Talented. Skilled.
I rely upon them. I appreciate them, but I hate the situation.
Talk about reality being right in your face.
This is about as real as it gets.
But I had a brief meeting with a nurse to go over nutrition options with me and explain a little about what's going on with my body.
The rads won't affect me for a week or two and may not really bother me at all. And before the esophagus swells from the radiation, it might actually be easier to swallow as the tumor shrinks.
For starters, I'm in good shape going into this. I am adding to my weight, which is a good thing, she said. And I can still eat. Food. Many men in my position cannot, and that makes for trouble.
I do need to get multivitamins and stock up on whey, protein and other powers to add to my food. I'll do this today.
Oh, as the title of this installment implies, I have an answer. The question was posed yesterday: Why flavor my feeding tube food with vanilla? Answer (no joke, I swear): Some people drink it from the can.
Thursday, October 11, 2007
(See photos below.)
The good news, though, is I won't have to taste it.
The supply company delivered the pump that will infuse it into my feeding tube if the need arises.
It's just such an appetizing thought, let me tell you.
One question: This is set up to feed me when I cannot eat with my mouth. Cannot taste a thing.
So why is the Nutren vanilla flavored?
Knowing that this gauge taped to my chest is more of a high-tech meat thermometer than anything else. It's creepy.
But I didn't feel anything. And they say I shouldn't feel anything differently. For a few weeks. That's when my esophagus might begin to swell from the rads. Maybe. I'm hoping not.
But if it does, I have this feeding tube to keep me filled with nutrition. Supplies to use it will be delivered today sometime after noon. A pump (not unlike the one keeping Mom alive) and the various formulas of food will be dropped off and set up. Can hardly wait.
In spite of all the luxuries I'm anticipating, I'd so much rather be at work. I love being home, being with Catherine and the girls when they're here. Truly. But given the circumstances, I'd prefer things to be status quo, working as usual.
Wednesday, October 10, 2007
Day 1 of radiation really wasn't.
It involved getting X-rays and the tattoos. But the radiation itself begins at 9:20 a.m. Thursday. Then, the same time Mondays through Fridays. Can't wait.
The crew at the doc's office was nice, and daughter Karen shot the accompanying photos during the procedure.
I'm pretty upbeat after they said the radiation itself won't make me too nauseous. It's the chemo that will get me. Luckily that hasn't happened just yet.
Earlier, Kim, Karen and I had breakfast at TooJays, which is easy to become habitual.
So for the next few months I'll be shifting from night-side activities to daytime. Already, I'm up early enough to chat with Walter at the Sentinel, who read my early morning post, commented and then to whom I commented back before my appointment. Talk about Bizarro World. This is it.
In more ways than one.
This whole experience remains so surreal. Nightmarish in many respects, except I just don't wake up from it. It just goes on and on. When I think I'm at a "save point" where I could wake up, I still don't arise. It's still the nightmare. Life goes on.
It isn't supposed to take too long, though they do have to set me up with the permanent markings and run through the doctor's protocol for my radiation treatments. Then, I guess, the zappage will begin.
I'll log back in afterwards and let ya know what it was like. Will I glow in the dark? Will I erase my own credit cards? Will my cell phone be recharged by my ambiance?
For answers to these and other questions, tune in later.
Tuesday, October 9, 2007
I'm getting used to toting around this pump, which seems to fire another bit of chemo into me every five minutes or so.
The stomach tube is the biggest pain in the, well, in the stomach. It doesn't hurt, exactly, but it's uncomfortable.
And when I look at myself, bald and with these devices attached, I feel like Keith of Borg and just hope no one unplugs anything important in the interim.
Today will really be my first day off work and I know I'm going to miss it. I know, most folks would enjoy a break now and again. Maybe under different circumstances. But on a scale of either work or this, gimme work, unpaid, extra hours, any day. Oh, wait, that's the norm, right?
Well, have to run for now but I'll be back -- that's my new mantra.
Monday, October 8, 2007
Of course, daughter Kimberly was with me almost the entire time and when she wasn't there she was in the hospital cafeteria grabbing me a sandwich.
The blood they drew when I arrived showed everything looks good. My white cells are up, platelets are good, red count is good. Way above the minimums.
But Dr. Z said in a couple of weeks he wouldn't doubt if I need hospitalization for a few days to boost the numbers anew. I guess these meds plus the radiation will sap me of my good numbers.
Later on, I'll scan these so my medically inclined cousins and friends can make sense of it all. I don't ascribe to the HIPAA public-records restrictions so I'll break them myself. I am hereby waiving my HIPAA protections, thus indemnifying my own blog and its host, a subsidiary of Google called Blogger. Whew, do I feel safer now.
I took advantage of several of the tips listed to the left, such as the skin lotions, mouthwash (though magic mouthwash is a prescription item and the doc says I don't need it yet).
I did pick up a prescription med to help if I get nauseous, but so far that hasn't been an issue.
I've been out of the house for about eight hours and feel a bit pooped.
I'll be accompanied by my lovely daughter Kimberly, and on our way I'm going to make a stop at the local Hair Cuttery to do on my time frame what the chemicals and radiation were likely to do on their own schedule: Lose the remaining strands of hair from my scalp ... for the time being. Catherine jokes (I hope it was a joke) that I won't look too different.
Then it's off to the hospital. I don't think I'll get sick right away, but it could happen. Literature on the chemicals I'll be treated with offer mixed assessments. So I'll just say I'll probably get queasy, and hopefully it won't be right away.
I think I'll post some of the reports and literature on my treatments on the blog somewhere. So keep checking. I know the reading will be compelling (NOT!) but just because it's there doesn't mean you have to read it. But someone going through the same ordeal as I might just find it worthwhile. And, after all, I'm doing this with the hopes of helping another person or two about to undergo a similar life-changing event.
I must at this point comment on the send-off my friends at work put on for me Saturday. I was deeply touched and I feel even more obligated now to kick this thing -- and pronto -- so I can get back and rejoin my colleagues and friends.
The food, the hugs, the warm thoughts all really choked me up. And it's not easy to silence me but I was at a loss for words Saturday. So to all of you I just would like to say thank you very much. I'm still somewhat stumbling at things to say.
Yesterday, Catherine and I visited Mom in the hospital and she was awake after three weeks under sedation. She was a bit loopy but was able to talk by mouthing her words and using hand gestures. When I told her she was out for three weeks she was shocked. It was good to see her smile when I told her about Jen's planning and Aimee and Karen's new apartment and Kim's attempts at driving. I think she might actually be moving forward in her recovery again. Whew.
Well, time to flush my stomach tube and get dressed for the doctor's office. I'll update later today.
Sunday, October 7, 2007
Saturday, October 6, 2007
I'm going to bring some of my stuff home but leave some of the desk ornaments there. After all, like I keep saying, I will be back.
Today's routine will be about average, and tomorrow Catherine and I will drive to South Florida to visit Mom. Not sure when I'll be able to see her again after this gets under way.
My chemo treatments begin Monday and the daily radiation zaps start Wednesday. Doc Z says he'd be surprised if the chemo didn't send me to the hospital at some point during the treatments.
I can hardly wait.
Friday, October 5, 2007
She also said it's a good idea to get your teeth cleaned before starting the treatments. Of course this to a man who skipped dental work through the '80s. "Get your teeth cleaned if you can, before you start treatment. If not, call your dentist, tell him/her what's going on and ask if there's anything you can do. I know that sounds odd, but they gave me a very strong fluoride rinse to help protect my teeth from the drugs/rads." In this regard, there's one final suggestion: "Has the doctor said anything about 'magic mouthwash?' It's VILE, but it does help. Ask about it."
This friend and another both warned me of the sunburn-like blistering the radiation can cause. One tip from another friend was to get Solarcane to help with the blistering, especially on the head. My young friend writes this: "You may get like a sunburn from rads ... ask the doc's office for Aquaphor if they don't give it to you on their own. It helps with the burn. I think they sell it at Walgreen's, too, and it's over-the-counter."
And she also says that as much as I enjoy the contacts from friends and family, there will be times I won't. When that happens, don't be afraid to say so: "I'm sure you have an amazing support network. It definitely helps, believe me. But there are two things many people who aren't going through this don't realize. For starters, they may be by your side every step of the way, but ultimately YOU are the one going through this. I know my family would get mad at me when I said that, but the bottom line is I was the only one who was feeling all the side effects from the drugs and rads, no one else. And the second thing is, many people will want to check on you, call you, wish you well, etc. I relished it. In the beginning. After a while, it got old and I started to resent the constant inquiries. Everyone always asked with that anxious look in their eyes, praying that today was better. It always killed me to see that, especially on days it WASN'T better and I felt like hell."
And finally, she offers these wise words. "Seriously, though, don't feel like you have to be 'on' all the time. It takes its toll, and you need all the strength you can get. You'll figure it out for yourself, what your comfort levels are, but just try not to feel that pressure."
Thanks, my friend, for all the good advice. Keep the tips coming, and if anyone else has something to suggest, please do. We'll be in touch.
She's a cancer survivor in her own right, but this was difficult because she's been so affected by my mother's hospitalization that I wasn't sure how she'd take it.
I told her not to cry just yet -- which didn't work -- but to remember that I'm still alive and kicking and not going out without a fight.
So now I think everyone in the family knows -- except Mom, who remains in the ICU at Kindred Hospital Fort Lauderdale.
Sunday I'll visit Mom and it'll probably be the last time for a few weeks.
Work last night went well, and I know that when I am off I'll really miss going into the office. I've worked my adult life so it will be very odd to not go in. This blog will take on a greater role when that happens -- which is Monday.
Of course, Dr. Z tells me the chemo will really knock me off my feet, so I probably won't miss going in say, in about a week or two.
But right now it feels as if a part of me -- one that I really like about myself -- is being taken away. I keep telling folks ala Arnold that "I'll be back!" Yet I know there's a 50-50 chance right now that that won't happen.
So I write here to relieve the stress and focus on something in the future. I must keep looking to the future.
Thursday, October 4, 2007
I heard back the other day from a longtime friend who, until the other day, I had no idea was a cancer survivor. And has been free of the disease for nearly 10 years. She doesn't want her name used here, and I'm happy to accommodate. But she offered me a slew of wonderful tips, and I will add them here so others in my shoes might learn.
First among her tips is this: "Plan something big for yourself when your treatment is over. My thinking always was, 'Hell, when it's over, that's going to be reward enough!' But honestly, it wasn't, believe it or not."
I believe it, my friend. After just surgery, I feel like I owe myself something.
I can't help but to follow her advice. It's going to take a while, and I will consider the end of my treatment after my surgery. So it's a way off, but still a great idea. And a goal.
Another tip from my friend: "Set mini-goals for yourself, like, 'After the first week is over, I'm going to do XYZ.' Or buy yourself a small present or something. Trust me, it helps. A lot."
This person is several years younger than I, and she had the disease when she was just a wee lass, barely out of college. Still, her wisdom shows: "I'm not going to sugar coat it (and I'm sure your docs didn't either), but you have a bitch of a road ahead. You're going to find strength inside you that you never even knew existed. Not necessarily a bad thing, either. Just sucks that this is how you have to find it!"
It does indeed.
I'll update with more of her insights after the nurse comes and goes.
And if you have any stories or anecdotes, either as a cancer patient or caregiver, please add comments. They'll help me, and in this forum they could help many others.
Wednesday, October 3, 2007
Wish the food was their equal. Imagine, if you will, a box of new Nike sneakers. Now toss the sneakers. No shoe-sole jokes here. But take the shoebox because it is essential to this conversation. Now, imagine running that cardboard box through a shredder. Make sure it's very fine.
With me so far?
OK, now add hot water, a bit of sugar, salt, milk. That was my breakfast, though they forged the name Cream of Wheat on the order slip. Still, after a night of Jell-O and coffee, I ate it. Every drop.
It's about 8 a.m. and my day today will consist of discharge, home, then to Doctor Diamond's Altamonte office for my radiation "sim." I'm thinking those tattoo dots will become a piece of body art after this is all over.
Thinking ahead, for sure.
Oh, Catherine began her own blog this morning. It's at CancerVivorspouse.blogspot.com. It starts out so well I'm wondering how she can keep up the content level. But I know she can. She's a wonderful writer and editor. Makes me look like a dolt. No comments about that, please.
Well, check it out and check back, as I'm sure there'll be a lot of fun updates today.
Tuesday, October 2, 2007
So far I have had gelatin, pudding, yogurt, soup, coffee and drugs. Mmm. Mmm. Good.
The nurses are all nice, and the visits from Catherine, Jenny (photographer of the image below) and Karen were nice. I hope to escape, I mean be released, sometime in the morning, and by 1 p.m. I'll be at the doctor's office in Altamonte Springs for the radiation sim.
I'll update tonight as warranted, but I can't anticipate too much going on between now and the morning.
Keep those cards and letters -- even better, comments and postings, coming in.
Monday, October 1, 2007
The feeding tube will be there for the days I cannot eat or drink because the radiation has swelled my esophagus too much. "You can pour Gatorade or Ensure in," Dr. David Diamond told me. He's the radiologist who is the other part of my chemo-radiation pre-surgery treatment. He's a nice guy, even if he leans quite a bit to the right. So far to the right that he said to warn off liberals because he might not be able to treat them the same. Yipes, I thought. I'm about as liberal as they come, I told him. Should I find another doc? I asked. Of course not, he assured me, even after I insulted his party, its leader and its leader's corruption. But I digress.
So I go to the hospital and will be there a day and a half. From there, I go to the doctor's office Wednesday to have a radiation "sim." This is where they figure out just where they want that radioactive beam pointing. And for how long. I'll be zapped five days a week. It'll be intense. But I think the chemo, a shot every 22 days or so plus a daily dose with a chemo pump strapped to my belt and injecting radioactive chemicals into that line going into the artery in my chest.
I just keep thinking how lucky I really am.
Click. Click. Click. A bumpy ride begins.
Yes, me. Cancer. Holy crap. I didn't know how severe -- or, hopefully, mild -- but I had it. The dreaded "C" word.
Click. Click. Click. Up we go. Ready for the big drop.
A few days earlier I went to the doctor to have a minor procedure to help me swallow food called, dilation of the esophagus. A five-minute procedure. But I woke up from the anesthesia 45 minutes later and figured something was up. It was.
"There was some swelling. You may need surgery," Doctor Philip Styne told me. "We took biopsies." Of course I was a little loopy, so these quotes might not be exact, but they're pretty close one can record without a notebook.
The following five days were murder. But Monday I received the call from Dr. Styne that the biopsies were positive. I had cancer.
Click. Click. Click. Nearing the top.
Next came anger, fear, reading, fear, appointments, fear, phone calls, fear.
Then, action, and, of course, fear.
Tuesday, I met Dr. Lee Zehngebot, who, despite what must be a job rife with morbidity paired with wonderful moments of achievements keeps a sense of calm, determination, drive and focus like no one I've met, advised me that all is not lost. Not yet, anyway.
I need tests. Tests that involve very expensive machines sending radiation through my body to see whether the cancer has spread from the esophagus and what kind of shape my body is in. (TIP: The "pleasant-tasting" bottles of barium used to provide contrast for CT scans can be made more pleasant by pouring in a liberal quantity of Nestles Quik strawberry-flavored syrup. It must be syrup. And I didn't find another brand at the Publix market I shopped in.)
But he also said there's a study. A study in which he and other doctors at the Florida Hospital Cancer Institute participated. The results are promising. The results are good. Best for this type of cancer.
The drop, gliding along the tracks at a quick pace, smooth so far.
A couple of days later I had the PET and CT scans. More good news, the docs said. Very good news. The cancer is isolated to the lower third of my esophagus. Whew. Good news galore!
So, as I've been telling family and friends, my bar for "good news" has been lowered. Now, being diagnosed with a very serious, generally fatal, form of cancer -- one that affects more than 17,000 a year, mostly men, requiring chemotherapy and radiation for 7 weeks followed by surgery and another month and a half of recuperation -- is the good news. And, get this, it could have been worse. Holy crap!
- Keep a box of alcohol pads nearby. When you're nauseous, the smell of alcohol halts the nausea.
- Don't stop being you. Allow yourself to be angry and upset, but also allow yourself twice as much to be happy and positive and encouraged. Don't feel sorry for yourself and don't allow people to feel sorry for you. And do not, under any circumstances, allow toxic, negative people to cloud your mind or your space with their negativity.
- Allow yourself to get angry, upset, frustrated ... and don't ever feel bad about it. The people around you will understand.
- Don't feel like you have to be 'on' all the time. It takes its toll, and you need all the strength you can get. You'll figure it out for yourself, what your comfort levels are, but just try not to feel that pressure.
- Ultimately YOU are the one going through this. The bottom line is I was the only one who was feeling all the side effects from the drugs and rads, no one else. Many people will want to check on you, call you, wish you well, etc. After a while, it got old.
- Plan something big for yourself when your treatment is over. My thinking always was, 'Hell, when it's over, that's going to be reward enough!' But honestly, it wasn't, believe it or not.
- Set mini-goals for yourself, like, 'After the first week is over, I'm going to do XYZ.' Or buy yourself a small present or something. Trust me, it helps. A lot.
- Stay away from chocolate. Hard as that is, for some reason it makes the nausea worse, and trust me -- you don't want anything helping in that department. Folks told me that and I ignored it -- paid dearly for it, too.
- Don't just stay away from the chocolate. Definitely and absolutely no coffee! No caffeine at all. It dehydrates. You need as much water as you can drink. Chicken broth sounds boring and not very appetizing, but it's important that you drink it as well. Also, apple juice is extremely acidic, so no apple juice if you're nauseous. In fact, nothing acidic.
- You may get like a sunburn from rads ... ask the doc's office for Aquaphor if they don't give it to you on their own. It helps with the burn. I think they sell it at Walgreen's, too, and it's over-the-counter.
- Get Solarcane to help with the blistering, especially on the head.
- Get your teeth cleaned if you can, before you start treatment. They gave me a very strong fluoride rinse to help protect my teeth from the drugs/rads." Also, ask about 'magic mouthwash.' "It's VILE, but it does help. Ask about it."
- The "pleasant-tasting" bottles of barium used to provide contrast for CT scans can be made more pleasant by pouring in a liberal quantity of Nestles Quik strawberry-flavored syrup. It must be syrup. And I didn't find another brand at the Publix market I shopped in.