Hanging in There
I’m still alive, but my health has really been slipping in the last two months. Hope to get some posts out soon, but I rarely feel like writing.
Looks Like I’m In!
I received good news today. It was in a fortune cookie from Pei Wei.
“You will move to a wonderful new home within the year.”
I’m thinking the reference was about heaven, because we have no plans to move anywhere and our home here on earth is already wonderful.
And I have to admit, this heavenly news came as quite a relief. Up till then, I’d figured I was pretty much on the bubble.
Quick Update
Today, I’ve left the house (other than two brief walks) for the first time in a week. For the most part I’ve been in bed, hoping for a change.
But today I managed to drive my car to work for half a day.
The new medications (lasix and another diuretic) have helped a little, I think. It’s hard to tell, really. Less fluid seems to be gathering in my stomach, although it’s still gathering. I’ve only been able to eat small portions of anything, so I have little energy. And I drink as much as I can, but that doesn’t seem like much either.
They’ve said I can do no chemo for a month. The chemo, however, is what is holding the cancer back. So I’m kind of stuck between a rock and a hard place here.
I’m just trying to do the best I can during this rough patch, hoping I will have some return to normalcy in the future.
Ultrasounds, Hospitals and Doctors, Oh My!
That I’m back at the computer at all is saying something, for the last six days have been a down-spiraling curve of declining health, or, perhaps, symptoms that can lead to no other conclusion.
It started weeks ago, as I described in past posts. The Ascites (fluid filling up my stomach cavity) had been momentarily forestalled by draining it out with a needle. This had allowed a long-awaited trip to Austin, twelve days ago, and a reading at Full Circle Bookstore with friends the Monday afterward.
After that, I was scheduled for chemo on Thursday, six days ago. But at that point things started going downhill. My labs came back with some problems that prevented me from receiving chemo. (High proteins and bilirubin scores). Instead, I was given fluids and Avastin and sent home. Meanwhile, the fluids had started building in my stomach again and I was feeling tired and bloated.
Halloween weekend was fairly miserable. I’m not sure that I ever left the house, except for a walk with my wife to Starbucks and an hour cleaning leaves from the pool, both of which were followed by three hour naps. I couldn’t eat, so my family went without me, bringing me home some soup afterward. I did my best to choke it down.
By Sunday night, my stomach resembled Buddha’s, and I was having trouble breathing. At one point, my son became very concerned, which is saying something when it comes to a teenager, and my wife was threatening to take me to the emergency room. I had a doctor’s appointment on Monday, so I was able to convince her I could make it until then.
On Monday, I met with doctors and described my latest symptoms. They sent me for a chest x-ray and an ultrasound and another procedure to have to ascites removed. 1.4 liters of fluid were taken, but I also had fluid in my lungs, so they checked me into the hospital for the night. The plan was to check the fluid in my lungs the next day and drain it if needed.
My condition improved, however, after the stomach fluid was removed. Follow-up x-rays and ultrasounds on Tuesday showed that most of the fluid in my lungs was gone too, meaning it had likely infiltrated the lungs from the stomach. New drugs were prescribed to try to assist in getting rid of the stomach fluid and I was sent home.
My stomach feels much better, for now, and I have been able to eat a little again. But I was exhausted on Tuesday night and having trouble breathing again. Plus, I had chills and couldn’t get warm.
It is now Wednesday and I’m resting at home. The chills are gone and I have enough energy to, well, think and type. I’m still not breathing well, however.
So what’s wrong with me? A damaged liver? Blood pressure issues? Some other condition relating to treatments? Walking pneumonia? H1N1? A combination of these? Or none of the above.
Who knows? But tomorrow it’s back to the doctors with the goal of getting me stable enough to do chemo.
Hooray.
As the Stomach Turns
Sorry for the delay in this update, but you can pretty much bank on the fact that when I’m not writing I’m either too busy or too sick. This was a combination of both.
Last Thursday, I finally had the fluid that had accumulated in my abdomen removed. It was quite an ordeal, much more involved than I had been led to believe. Arrived at the hospital at 10:45 a.m. and wasn’t released until 4 p.m. There were doctors, nurses, anesthesiologists, ultrasound techs, etc., involved, and I hate to see what the final bill will have to say.
The procedure left a large bruise and some soreness in some unexpected places, like my leg. But it did ultimately provide some of that much-needed relief I was after.
Once they got going, they were able to drain somewhere between 1.5 to 2 liters of liquid in about ten minutes. The stuff was green, like green beer on St. Patrick’s Day. (I know what some of you are thinking!)
Anyway, afterward I felt much better. Not good mind you, but a lot better than miserable.
I still haven’t been able to eat much, or drink either for that matter. This, of course, is a concern. I’m worried the liquid is coming back again and that I’ll soon be back to where I was.
I’ll meet with a doctor in two days, and they’ll tell me what was in the liquid and where it likely came from. Hopefully there will be a plan to provide additional relief. I miss going out to eat with my friends.
But let’s be thankful for small victories. As a result of the procedure, I was able to head to Austin this weekend with my son Ford. He had done the music for a film (Simmons on Vinyl) that was premiering at the Austin film Festival. He even had a part in the movie. We attended a sold-out screening and watched a q & a session afterwards with writer/director Mark Potts and cowriter Cole Selix. And the next day, Ford played a gig at Progress Coffee in downtown Austin.
Fun times, getting the chance to see my son’s music in a real movie, real theater, before a real audience. Hope to have more of them.
Belly Achin’
Some of you were familiar with Winston, the black cocker spaniel LeAnn and I owned back when we were first married.
I say owned, but that’s really not the way it worked. Winston was one of us. He truly believed he was a human, not a canine. When other dogs came around and start sniffing, Winston didn’t really know what to do. He seemed put out by it, as if he was trying to figure out why this whatever-it-was found him so interesting. We never had to get him “fixed,” because he ignored other dogs and kept to himself.
Anyway, Winston did have a few bad habits. One of the funniest was that he was an absolute pig when it came to eating. He never fully trusted that his dog bowl would be full again the next day, so if he found something worth eating, he would gulp it down voraciously until it was gone. I was able to teach him an incredible amount of tricks based upon his love of food.
On several occasions, after LeAnn and I had bought groceries but left a few items on the counter, Winston would make his move. He would stand on two legs, natch, lean up over the counter, and pull an entire loaf of bread onto the floor. Ten minutes or so later, when we returned to the kitchen to put away the rest of the groceries, we would find Winston lying on the floor, passed out with his stomach protruding out as if he were in the ninth month of pregnancy.
He had eaten the entire loaf of bread! When we touched his stomach, it would be rock hard, as if it had been a loaf of cement rather than bread. Winston would be in misery for the next day as a result of these antics. But if given the opportunity, he would surely do it again.
Which brings me to, well, me.
Several weeks ago, I spoke of new pains that had been forming in my abdomen, pains that worried me as I went for new tests in Houston. Thankfully, those pains had nothing to do with the cancer inside me. They had more to do with side effects relating to the treatments I’ve received. But with some new meds prescribed, I would hopefully be feeling better soon.
Except I haven’t felt better. My stomach has kept hurting. It is tight and bloated, like Winston’s after his bread buffet. I can’t sleep. I can’t eat. And yet I’m suddenly gaining weight.
Gloom, despair, and agony on me.
Last week I found out my liver enzymes were at a higher level than usual. I was also nearly dehydrated, because I haven’t been able to drink much.
So this week, it’s been back and forth to the doctors. Blood work. An ultrasound. Turns out some fluid has been building in my stomach/stomach cavity. Hence the Winston effect. Hence the pregnancy look. Hence the reason why my belly button may soon be an outie.
Tomorrow, they’ll go in with a needle and remove the fluid. And hopefully, unlike Winston, I’ll finally be able to sleep.
Cold as Ice
Chemotherapy doesn’t seem to help a lot when it comes to maintaining a normal body temperature.
Week after week, when they take my temperature prior to treatment, my temperature is running low.
98.0.
97.2.
97.7.
If my temperature ever gets up to the normal range, 98.6 or, God forbid, 99.0, I start worrying that I’m getting the flu.
In the summertime, my amphibian-like temperature has little effect on my days. Summers are pretty hot in Oklahoma, so it doesn’t hurt to take the edge off with my sub-par temperature.
But when the season changes and we start having a few cold, blustery days, as has been the case during the last week, all bets are off. I find myself chilled to the bone, unable to get warm no matter what I do.
The other night, the temperature was supposed to dip down into the thirties. It was bedtime, so I put on socks, heavy sweatpants, and a pullover sweatshirt with an undershirt beneath. Then I got under the sheets and the covers, which included a heavy comforter we had just put on the bed.
LeAnn began complaining about how hot it is with the comforter. Meanwhile, I’m in a fetal position under the covers, shivering. I went and put on a beanie, so the heat couldn’t escape, and then I got my favorite blanket to wrap around me. Finally I began to get warm.
The next night, the comforter was gone.
“It was just too darn hot,” LeAnn explained.
It’s going to be a long winter.
Good News
Well, the word from Houston was good.
My cancer had not grown to any significant degree since my last visit. An enlarged lymph node had not changed either. And there are a couple of experimental treatments that I may qualify for down the road.
So we spent a lot of time discussing the cause of my current side effects and how to manage them. I received a new prescription that may help. And my old stand-by, Nexium, will be used more.
While I was quite surprised by this news, based upon how lousy I’ve been feeling lately, there was little time for celebration. The news came just after 4 p.m., and our flight home was at 6:55.
We took a taxi to the airport, ate a quick bite, flew to OKC, and arrived back in Norman by 8:30.
Ahhh, home sweet home.
Writing From Houston
It’s Wednesday at about noon and I’m writing from a hotel in Houston where I stayed last night. I’m trying to relax a bit after a grueling day of medical tests yesterday. We will meet with my doctor this afternoon to hear where I currently stand.
Yesterday was one of those days you just have to get through, write it off, and hope that the new day is better. My flight was delayed (which was fine because I got to hang out with my friend Brooks at the airport). There was bad weather between OKC and Houston, so when we took off an hour late, it was a bumpy, turbulent ride. (Still, no complaints. It’s amazing that one can fly in conditions like that and get to Houston in about an hour.)
I arrived and went in for blood work. Unfortunately for me, the girl I drew was a novice. She missed my vein twice, then did that horrifying thing when they move the needle around in your arm, searching. YIKES! Thankfully, she called in reinforcements, and things went well after that.
From there, I had a chest x-ray. Then I went choked down a tuna sandwich and walked over to the Rotary House and spoke to a group of cancer patients about writing through difficult times.
At 7 p.m., I was back at MD Anderson for a chest CT scan. I had to drink that disgusting barium drink they give you for the lower GI (that’s code for a hose up the butt and an enema). To prep, I had to get an IV, which meant being stuck with a needle in the same arm for the fourth time in five hours.
The test was over at 9:30 p.m., and I caught a ride to my hotel, where I drank as much water as I could and ate dry Fruit Loops until I fell asleep.
As for today? Well, to be honest, I’m not expecting good news. My stomach has been hurting a lot lately. I have strange new pains in my middle section. I only eat about one good meal a day. And my voice comes and goes. More often than not, it sounds raspy and breathy.
Maybe we’ll be surprised. Maybe there are minor adjustments we can take to help things. I have been experiencing a lot of stress lately.
I guess the CT scan will tell us what we need to know.
A Special Place in Hell
People fascinate me.
When the Life is Real series commenced last December (you know, back when they ran some of it in the paper), I was surprised by the number of people who came to the blog of a dying man with an agenda. Not a hidden agenda, mind you. An in your face, take this opinion or else agenda.
Many of them had products they wanted me to buy. You know, miracle pills that “the doctors and insurance companies don’t want us to know about.” The fix-all diet. Stuff like that.
A few had actual medical procedures they wanted me to try on for size.
Others wanted me to “buy” into their personal belief system. Not knowing what mine is, they would invent one for me, before going to great lengths to show me the error of my ways. (By the way, my belief system’s not exactly hidden. If they would just buy the books, they could learn all they ever pretended to want to know.)
Thankfully, most of the people who were once so concerned about me have now gone away–now that the media attention has disappeared.
Which leaves, for the most part, you. The real readers. The ones who were actually interested in my story, my predicament, my tragic tale, my random thoughts as the clock ticks down. You are the good guys, the ones who leave thoughtful comments, send interesting e-mails, encourage me when I’m down, and celebrate when things happen to go my way. You are the ones who get me.
And hopefully, you’ll be the ones who will remember me when I’m gone, the ones who will be there for my family. Because I need that from you. I really, really do.
Now the only irritating “readers” that are left are the spammers. These are the people who search for blogs, pretend to read the stories, then insert some advertisement or product-related e-mail into their message.
I received two of those today. Thankfully the software caught them before their messages made it to the blog.
But how fascinating is it that these moneychangers try to use this site as a place to hawk their goods? There’s gotta be a special place in hell for people like that.
