“Oh.” He nodded, taking in the information.
“Do you feel anything now? Any tightness in your chest? Discomfort with your heartbeat?” asked the nurse.
Patrick looked calm and maybe a little puzzled, “No . . .”
It was strange to me that his heart could be thumping at 164 to 167 beats per minute, and he didn’t know it and didn’t feel a thing.
Several doctors came in to talk to us. The type of bacteria causing the infection and the fact that Patrick’s left arm had some swelling in it pointed to his portacath, the access that had been put in his chest, as the culprit of the infection. They felt this was very likely, so likely that it was suggested that they take him into surgery as soon as possible and have it removed. Damn, Donny and I had been so careful dealing with his access, and it had lasted months and months! But we had been warned that the port site was vulnerable.
“What about his heart rate?” I asked with concern, “Won’t that compromise his safety?” This just seemed dangerous to me.
One of the doctors nodded. “It would be better if his heart rate was normal. But we’re afraid that if we don’t get that portacath out he won’t improve. We’d be trying to treat the infection, and the portacath would just keep reinfecting him.”
“And we’d be chasing our tail.” I frowned.
The doctor nodded.
Oh, this is one of those “gotta do something” situations. I didn’t like it. It made me fearful, but . . . I nodded in understanding. And when the nurses hooked Patrick up to a monitor before they transported him, we could audibly hear his heartbeat.
Rat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat-tat -tat-ta . . . So fast. So fast . . .
Patrick looked up in disbelief, “Is that me?”
“Yes,” the nurse nodded.
“Wow,” he said, thoroughly impressed. And he finally understood why such a fuss was being made.
—
DURING THE portacath removal, I took the opportunity to sleep, keeping one ear out.
The doctors walked back into the ICU ahead of Patrick, all smiles. All smiles are good! I hopped off my recliner chair.
They had successfully removed the portacath. However, during the procedure his heart rate zinged up. The female anesthesiologist had the presence of mind and nerve to try one drug no one had tried yet—and it worked! Patrick’s heart was now beating normally. I wanted to hug her and give her a medal. Hell, I wanted to give them all medals!
“What was the name of that drug again?” I wanted to remember it. Who knows, we might run into this situation again.
After a week of more poking, and prodding, and reining in the rest of the infection, we were back home.
That next Sunday at five thirty in the morning, our third, beautiful mare, Shirin Jewel, foaled a beautiful, long and lanky-legged filly. Again, we were present for the birth, which, thankfully, went easily. Patrick gazed at the little filly through the bars of the stall, and I saw him kinda half smile at her. He was tired. And after a while, he walked back down to the house. He just wasn’t as interested this time.
Five-year-old Patrick shows off his muscles,
with his dad and a friend smiling in the background.
Chapter 20
MY SECRET WEAPON
ON AUGUST 10, we showed up at Dr. Hoffman’s office for Patrick’s chemo appointment. He had been out of the hospital for a full week now and had finished the rest of his antibiotics at home. Finally we would get back on treatment.
It was not to be . . .
Although Patrick was feeling much better, his blood work showed that his WBC, white blood cell count, was still high, indicating that he still had some other underlying infection. Under the circumstances, we needed to hold chemo treatment, and Dr. Hoffman put him on yet another antibiotic. We were learning all these antibiotics and their functions: There was the one that was like a massive all-over spray, the pinpointed-zap-you one, the big mother of antibiotics, and then the chaser antibiotic that you use to treat the stuff that sneaks in because of all the other antibiotics. We never ceased to be amazed at how the antibiotic was administered when we were at home. It was premixed into a small- to softball-size frosty plastic ball. You hooked this up to his port (clean, of course) and released the clip and over a predetermined time period, the ball would collapse, pushing the antibiotic through the line and into the port. Amazing! Patrick could just stick the little ball in his pocket and walk around anywhere.
Needless to say, the news that Patrick had to hold off on treatment was extremely stressful yet again. We had been through this scenario several times this year, and he had come out the other side with flying colors. But I knew not to take anything for granted. This was a killer disease, and he’d already been off treatment for three weeks again. And now it would be yet another week. At a minimum, it was going to be a full month with no chemo! The very thing I feared was now happening. It was exactly what I was afraid of happening when he missed that chemo appointment. I didn’t want to say, “I told you so,” especially since I had no one to point a finger at, but I told you so. I couldn’t believe it . . . the one time I let him miss an appointment, this happens! And I’m sure it was coincidence, but it was a little strange. Man, this disease just doesn’t give you a break. I felt like there had been an error, my error, and there was no room for such things in Patrick’s life.
—
THE COMPLICATIONS that had arisen made taking care of him even tougher and more exacting. Certainly the previous infection that landed him in the hospital had tested the strength of my nerve. And now, once again, I felt alarm at the delay in Patrick’s treatment. And overloaded with responsibility . . .
I’m feeling a little bit panicked. Like drowning, gurgling in this mire in all the requirements of things I need to do. I get afraid that I can’t take it anymore. That I’ve reached my limit and will fold into a tiny painful ball, not even good for myself let alone anyone else. I keep searching for strength and find the reserves empty. And then . . . I keep searching again.
Sometimes I feel like I’m living for Buddy. He can’t get up, so I do. He doesn’t take care of business, so I do. I even help him up at times to go to the toilet, ’cause as of yet, I cannot defecate or pee for him. I keep positive, I find a way to get through another day. I feel how he’s feeling so I know what medications to give him. I feed him ’cause I intuit that his body needs it at one time or another. I open his eyes to the day.
August 11, 2009
I can only imagine that this is how many people feel when they are taking care of someone in such a difficult situation. You start to feel like you actually breathe for the other person. You are so tuned in that you know how he’s going to feel even before he wakes up; by how he moves, rolls over, by his breath, his expression, and the position he might hold his hands in . . . And from that moment, it’s through your sheer will that he lives through the day, that he smiles, that he feels good, or at least, feels better than he would have.
And maybe it was not so much that I was finding myself exhausted again as that I didn’t know where I left off and Patrick began. It’s living out there in a different place, in a kind of altered state. On top of all this, in your spare time, you take care of everything else in your world—work, bills, legal stuff, groceries, cooking, answering the phone, talking to doctors, ordering medical supplies, cleaning . . .
It tested my Sisu, the limits of my physical and emotional stamina. And I was grateful for every moment of it. There was no place on earth I’d rather be.
—
THAT SUMMER, we received a package in the mail. I hefted it in my hands. Hmm, heavy . . . Upon opening it, we discovered that someone we didn’t know had sent us a large, very elaborate book about medicine, its history and art. Hmm, where did this book come from? A note directed us to one of the very first pages, it had a picture of a head and brain, and “For the mind and for the heart,” and then under it, a quotation from Oscar Wilde: “Life is too impo
rtant to be taken seriously.” And then, a quotation of Johnny Castle’s from Patrick’s movie Dirty Dancing, “The steps aren’t enough—feel the music.” What this had to do with the book we didn’t know, and we opened it to skim through to find out!
Inside we found text and illustrations of different medical treatments throughout the ages. And on first look, they all looked like something out of a horror movie! There were photos of syphilis sufferers, descriptions of eye procedures that were downright barbaric . . . Antiquated, horrible surgery procedures for broken bones and other more serious maladies . . . It was unsettling. Patrick and I looked at each other, and we didn’t know whether to laugh or be disturbed!
“Why would someone send us something like this?” I said.
“It’s really, really strange.” He nodded.
Given Patrick’s health struggles, did the author think that this book with its gruesome photos and descriptions was going to cheer us up? People are strange, I thought. But it mystified me enough to thumb back through it, searching for an answer . . . And then I found it. I excitedly carried the book back to Patrick.
“I know why this was sent this to us! It’s not horrible. It’s actually . . . quite beautiful,” I said, and then read him the quotation from Harvard professor Oliver Wendell Holmes, Sr., that was tucked in before the book’s introduction:
There is nothing men will not do, there is nothing they have not done, to recover their health, and save their lives. They have submitted to be half drowned in water, and half choked with gases, to be buried up to their chins in earth, to be seared with hot irons like galley slaves, to be crimped with knives like codfish, to have needles thrust into their flesh, and bonfires kindled on their skin, to swallow all sorts of abominations, and to pay for all of this as if to be singed and scalded were a costly privilege, as if blisters were a blessing and leeches a luxury. What more can be asked to prove their honesty and sincerity?
We want to live. And this book demonstrated the lengths to which people will go to survive and to improve the quality of their lives. Life is precious, and worth fighting for! “See how much,” the book was saying. The significance of that quotation was not lost on me in regard to Patrick. I mean, look what Patrick and I had done for the last twenty months! What we had gone through!
Patrick just sorta nodded like, eh, he wasn’t convinced. But I think he was in the midst of what he called a “Dilaudid Moment.” So he nodded at my discovery and went off to do something else.
Then again, maybe he wasn’t going to get too excited over what I was talking about because it was something that he was living every day. Life is precious. Clearly, his life was precious to me. And to him.
I would have gone to any lengths to keep him here with me, short of taking him to voodoo doctors or indulging way-out-there alternative therapies. I emphatically believe in the power of positive thought and intention. And Patrick and I were always open to prayers and healings, and also supercharged waters and supplements, as long as they were okayed by his doctors and didn’t interfere with his treatment. But there was no way I was going to entrust my husband’s life to a treatment that was entirely unproven and based only on testimony. Not unless he requested it. There are so many stories of people chasing cures, people like the great actor Steve McQueen who pursued treatment in Mexico, only to be taken for loads of money and suffer because of it. We were doing everything we could for Patrick to live. And every ounce of Patrick’s strength was being called upon when he went through treatment. But he wasn’t going to panic. As he said, “I want to live. But I’m not going to chase living.” His attitude was that of an intractable winner. He was going to be brave enough to do this on his own terms.
By saying this, I believe he was more alive.
—
HE STAYED on antibiotics throughout the week, and we took that opportunity to start recording the audio book for the autobiography that we had just finished. Amazingly, we were finally done with the book. It had been very intensive, hard work, and we were very happy with it. Then there are all the peripheral things to accomplish, such as choosing and getting permissions on all the photos, approving press releases, book cover and lettering to design, proofing the final . . . And now, with no time to waste, the audio book! We planned to record it with the audio book’s producer and an engineer in Patrick’s recording studio right here at the ranch. It was fantastic that Patrick would be reading it, but I worried about his energy.
This past infection had really taken a toll on him, and he still was struggling to fully recover. I suggested that if he felt like he wasn’t up to recording the book, then maybe Donny should read it. Time was running out before the book was to be released, and the recording had to be done. Certainly Donny was talented, had a wonderful “Swayze” voice, and it’d be keeping it in the family.
Patrick scowled, “I think that’s a really bad idea.”
Donny heard him say this, and when he found a moment, he took me aside and confided that his feelings were hurt . . .
“Does he think I’d be that terrible?” he asked.
Hah! “No!” I told him, “He just doesn’t like to think that there’s something he can’t do.”
You don’t tell Patrick what he can’t do, only he makes that decision. And nobody but Patrick was going to do this audio book. But come the first day of recording, he was feeling awful. Elisa, the producer, and our engineer sat out on the grass enjoying the day. They were great. “No hurry! Whenever . . . don’t worry,” they said.
A couple of hours later, I went into the bedroom to check on Patrick, and I gently suggested, “Why don’t you just give it a shot. I’ll walk down to the studio with you.”
“I really feel terrible.” He grimaced.
“Okay.” I nodded, “Then this is what I think . . . Since they’re here, go down to the studio, just for twenty minutes, and if you’re still feeling bad, we’ll send them home for the day.”
It was a deal.
I felt for him as I helped him down to the studio. But we were going to give it a shot. He was unsteady on his feet, and I let him lean on my arm for support and balance. He was feeling pretty rough. After introducing everyone, I excused myself and went back upstairs, since I don’t need to be a babysitter! Twenty minutes later, I called the studio on our intercom phone system to check in . . .
“How’s it going? Do you guys need anything?” I asked. And I could hear Patrick ask the others if they wanted something to drink. He came back to me on the phone . . .
“No, everyone’s fine,” he said.
“How are you?”
“I’m okay . . .”
“You want me to make you a shake? That you can sip on?” I offered. “Sipping” was a sneaky term I adopted to not put pressure on his appetite, but always to have food in front of him if case he wanted it.
“Yeah,” he agreed, “that’d be good.”
I made the shake and took it down and dropped it off. “Call me if you need anything . . .”
And time passed . . .
And then more time passed . . . And I figured no news was good news. But . . .
What were they doing down there? I finally called on the intercom to check in and was greeted by . . .
An energetic, cheerful-sounding Patrick, who was in midconversation with the engineer. “Hey, look! I know! I collected all those guitars, and then I had this banjo here. Wait a minute,” and he turned his attention to me, “Hey, Lis. Uh, what’s goin’ on?”
It took me a second. I was flabbergasted. “I’m just calling to check in. See how things were going . . .”
“Uhm, well. We finished the second chapter and were just getting ready to start the third,” he said. He sounded strong, and obviously had been chatting away. He shouted out to another part of the room, “How long do you think we’ll go?” I heard mumbling in the background, and then Patrick came back, “Maybe we’ll do chapter four. We’ll see how far we get.” He sounded . . . like himself . . .
Incredible!
He’d barely been able to move a few hours ago, and now he was operating with the same energy I saw on The Beast. You know, I could find the best doctors, the best treatments, food, medicines, prayers . . . but my best weapon against pancreatic cancer had always been Patrick himself. The strength he could find, both inner and outer, amazed me.
He worked in his studio for six hours with them before he finally stopped so we could administer our evening ritual of medications and hook up his TPN. It was well after midnight when he propped up his pillows so he could rest comfortably.
Our cushy mattress had been getting increasingly difficult for him to get in and out of. I had asked him if he wanted an electric medical bed. He didn’t waver a second before answering.
“No.” He shook his head.
“Why not?” I asked. “I think it’d probably be much more comfortable for you. You could raise the head without all those pillows and put your feet up, too . . .” I was doing a sales job because I thought that maybe he was balking because he didn’t want to look like a patient in his own home. But that wasn’t the issue.
“I want us to sleep together,” he said.
I was touched. And I nodded.
—
AT FOUR-THIRTY that morning, Patrick nudged me awake. He was sitting more upright than usual. I saw him shiver.
“Hey, Lisa,” he said softly, “I started shaking . . .” and a shiver cut short the rest of his words.
I immediately jumped out of bed and stuck a thermometer in his mouth. Within seconds it beeped—102.7. I looked at the clock, four-thirty. Great. I knew from personal experience in the hospital that Dr. Hoffman was already up and starting to make his rounds. I picked up the phone and called him.
“Hi, Dr. Hoffman, Patrick needs to check into the hospital. He’s got rigors and his temp is 102.7.”
“We’d better get him in,” he said, “I’ll get on it.”
By early afternoon, Patrick was in Cedars-Sinai’s ICU. His heart rate zinged up to 164. Nurses and doctors were alarmed and rushing around trying to figure out how to bring his heart rate down. I was unusually calm in comparison to the hospital staff, having been through this with Patrick only a few weeks ago. They were worried about his bpm being 164? Try 197! Then let’s see how everyone can panic! But I was ready and gave them the name of the drug that worked the last time, and I waited for his symptoms to turn around. But I was not about to treat this casually.
Worth Fighting For: Love, Loss, and Moving Forward Page 23