Inside the Book

Sneaky Peeks

Excerpt from Chapter Eleven

… During one of the last few nights of her life, Irene lightly touched me with her left hand. In a very weak voice that pained me to hear, she said,

“Tom”, that’s all.

That happened several times over her last three nights of living. At first, I interpreted it as Irene needing help to get to the bedside commode. On her final night of life, Irene first, flailed her arm over toward me. It was about 3 am. I got up and went around to her side of the bed and put my arms around her to lift her. She uttered what I thought was “No”. I laid her back down and went to my side of the bed. I did not envision it may be close to the end. I was still expecting months, or weeks, at least.

A couple hours later, she reached her left arm over to me once again. This time her arm movement had little strength to it. Her eyes were closed.

Irene simply said, “Tom”.

I got up and went to her side and sat on the edge of the bed. She was very quiet and still. I watched her soft face with her lips parted slightly. I watched for yet another half hour.

You’re so beautiful, honey. Please don’t leave me.

“I love you, honey. I love you, Irene.”

After I told her I loved her, I quietly went back to my side of our bed.

As I write this, I admit my lips are quivering. Today, while thinking about that final night months ago, might it have been her last plea? Was Irene letting me know she felt her death approaching? Maybe she wanted to tell me everything was fine and her pain is, at last, over after years and years of struggling. Maybe she wanted to assure me that she was ok and, not to worry. What was she trying to say? Lord, can I have those moments back, please, just for a little while?

At 6 am, I heard Irene’s voice for the very last time.

“Tom.”

I don’t know what Irene’s first words were as she made her way into the world of her troubled life. Maybe they were in Ukrainian, I don’t know. But I do know the very last word she ever uttered in this world:

“Tom.”

I got up again and went to her side of the bed. As I reached for her, I heard her deep breathing. Full of fear, I yelled for her sister to come downstairs. She had fortunately stayed overnight. Tammy hurried into the bedroom and I told her to get onto the other side of the king-sized bed and hold Irene’s other hand, her left hand, then lay down beside Irene.

I got a folding chair that I kept nearby for the hospice nurses during their exams and interviews with Irene. I sat beside the bed, on Irene’s side, and phoned hospice. The representative told me to give her a particular pain medication. I put it into Irene’s mouth then got a can of Gatorade with a straw that I kept for her on the night table. I could see Irene make an effort to draw the soda up the transparent straw. It was a very weak effort and, she could bring the fluid only part way toward her pale lips.

Abandoning the suggestion, I took the pill from her mouth through her partially opened teeth. I had to use the end of a handy spoon. Her teeth were barely parted, too closed for me to reach my finger in to retrieve the pill. Irene’s breathing continued with that raspy, tortured sound. I called hospice again and told them to rush a nurse. Tammy and I waited, holding Irene’s hands. 

I spoke to Irene telling her I loved her and pleaded for her to stay with us—don’t leave me. I told her I’ll care for her another nine years. We can keep on going, doing the same thing. We’ll apply for other clinical trials. Something else will be discovered, a new miracle drug.

Irene’s breathing did not improve. I made certain she was getting oxygen through her nose by adjusting the lines around her ears snugly—hoping, praying.

On that final morning, I saw almost two hours of deep breaths, and then, five seconds of her obviously final, even deeper breaths—five of them—and then, nothing. I never want to witness that again.

My first call to the Hospice of the Comforter at 6 am, evidently, may not have been interpreted as a “final moments” phone call. Maybe they were not expecting Irene to pass so soon, either. I called hospice again and, through my tears, I told them Irene had passed away. They dispatched our lead nurse. Over the next few hours, I felt Irene’s hand losing warmth as the hours went by.

I knew what death looked like. I knew the signs. Irene left this life at 8:20 am on Friday, June 22nd, 2012. Just 28 days passed since we were told she had three to six months to live. The official time of death was 9:30 am, when the lead nurse arrived and conducted the required pronouncement. 

…. Only a few days before, in the early evening, Irene and I spoke as we were lying side by side. It was no different than countless other evenings, though her words came haltingly. I didn’t realize it was our last pillow talk. Irene mentioned the surgery I needed for my hand. She made me promise I would get it done when she passed. She mentioned my stomach problems. She hinted that I sell both cars and get a newer one for myself. Still, Irene was concerned about me. We had those same conversations in the past. There was nothing out of the ordinary. But, Irene knew. I was unsuspecting, not at all ready for what was to come only days later.

 

More Excerpts:

“Our” Introduction: … Then, in early 2001, in an advanced detective prep course, there she was again. This time, she answered my roll call to a surname that was quite different ethnically from the name to which she answered in the first course.

Stasurak? I thought. That wasn’t her name back in ’99. I wonder …

“Did you get married?” I asked her. 

“No, sir, I got divorced.” 

… That was the beginning of my life together with Irene. And ever since that moment in 2001, despite all we faced in the future, I wouldn’t have changed places with anyone. I treasure the relationship I had with Irene—sweet, delightful, smiling Irene…. 

More from “Our” Introduction:

… This is the story of our many ups and downs as each phase of her treatment progressed through the years. I describe many of the side effects of her numerous chemo sessions, the major surgeries and many other procedures she dealt with. I explain some of Irene’s responses to treatment in enough detail, including side effects, so that people experiencing a diagnosis of cancer will be able to relate, especially when it’s almost too much to talk about to family and friends.

We managed several trips during treatment, even twice to California Wine Country. We also went to Las Vegas and Ireland. We made the best of any free time we had away from the hospitals and infusion rooms. We were always making deals with our medical team to delay a few days or skip a week of chemo so that we could extend our mini-vacations. At times, we would schedule earlier, or put off to later, a surgery until before or after the holidays, for example, so we could be home for Christmas or carve out a few more days free of hospital stays and treatments. 

There were periods in which there was “no radiological evidence of disease” or “no detectable hyper-metabolic activity”. In other words, the scans didn’t show any cancer. Actually, it was “under the radar”. We always took advantage of those breaks in treatment. We were terribly aware, most of the time, that Irene’s disease was systemic. 

We believed quantity would give us quality. People sometimes think they should focus the other way around. We didn’t! We didn’t have to make a decision between those two conditions even though, at times, we were asked to face that conundrum. But, to us, quantity would result in quality. We continued to hope for quantity. We would try to make our own quality.

 

Excerpts from Various Chapters:

Chapter Two: 08/21/2003: Oh, my! Biopsies confirmed my diagnosis of colon cancer. After colonoscopy at Nazareth Hospital, biopsies confirmed I was diagnosed with fourth-stage colon cancer (spread to liver through lymph system). Type: metastatic adenocarcinoma (big word, big trouble). Journal entry: Irene Stasurak [Cooney: married 4/1/2005]. 

… She learned of the bad news while walking that beat, protecting the citizens of Philadelphia, who, when they saw and exchanged greetings with the smiling officer, knew nothing of her state of mind or the confirmation of her cancer diagnosis…. 

Chapter Three: … Publicly, we acted as if nothing was going on in our lives. The cats still needed feeding and their litter box changed. Meals had to be cooked and bills paid. Life went on. 

… I would often be asked, “What can we do to help?” I would simply say, “Visit! Call, and ask if it’s okay to come over.” Just show up. Sit in on a five-hour chemo session or a ten-hour day with us, and go to the cafeteria with me when Irene tells us to take a break … while getting her cocktail infused. Time! That’s the greatest gift of love….  

… She wanted the operation to get the disease out of her body.  Imagine that … looking forward to a major operation…. 

Chapter Six: Besides not feeling well, Irene participated fully in agreeing to have surgery on the left lobe of her liver. The scans determined the node was near the surface and accessible so the surgeons were able to enter through an incision and “wedge” the tumor out of Irene’s liver. They didn’t have to remove the entire lobe. They removed most of the right lobe of the liver last time, remember…. 

Chapter Seven: … By May, no hyper-metabolic activity was detected. Let me say it this time: Whoopee! That qualified Irene for an immunotherapy study. Irene had the preparatory and painful femoral artery invasion, leukapheresis, by that physician’s assistant I told you about earlier who caused her to scream in pain. Tissue and blood work was forwarded to Duke University where specialists concocted a serum.

Once started, the study lasted four months with regular visits to the clinic for tests and injections. Irene didn’t have any chemo sessions during this time, just injections. That period was a relief but ended in disappointment. The lesions returned. Hopes get up then are dashed.

Bi-weekly chemo sessions began again by fall. After the infusion at the hospital, Irene came home with a bag containing 5-FU attached to her port. It infused over 46 hours then a home health nurse visited to detach it. The nurse drew blood and submitted it for examination. Four chemo sessions followed by the end of the year bringing the total to 98, not counting the home infusions each time. We also drove to numerous visits and diagnostic tests during that time.

2008: By January, 2008, Irene had a recurrence in her liver. She was infused with a cocktail that gave her a reaction that was too severe. She agreed to it even though she knew the effects were terrible. Finally, the doctors switched her to one that turned out to be less effective in the long run because in January, 2009, a year later, the nodule reappeared.

To give Irene periodic rests, we took a few treatment breaks. We arranged that by occasionally taking three weeks instead of two between infusions. The staging scans and blood work continued through the end of the year. By the end of 2008, Irene added approximately 20 sessions bringing the total to 118, conservatively speaking.

In December, 2008, Irene suffered very severe pain, diarrhea, fever, and blood in her stool. She dehydrated and was anemic, too. I rushed her to the local ER. She was admitted and spent four very uncomfortable days in a hospital bed. She was discharged just in time for the holidays: diagnosis unknown.

2009: The year 2009 was like 2008. It started off with a recurrence. Scans in late February showed yet a new lesion, again in her liver. Chemo restarted in January. She couldn’t get out of bed for several days after each session. There was metabolic activity near her right lung also. She refused to stop chemo at this time saying she wanted this disease “out of my body.” Irene had to be wheeled to the infusion room she was so weak. She received that session in one of the “penthouses.”

Regular chemotherapy, FOLFIRI plus Avastin, resumed in August and continued through December. Irene suffered serious side effects and the liver tumor still increased in size.

During this period, at home after each infusion at Moffitt, the visiting nurse removed the 5-FU dispenser bag, drew blood and flushed the port lead. I injected the blood thinner shots 24 hours after the portable bag removal. The pain in Irene’s stomach was very sharp and Irene’s hair was falling out again. Infusions restarted in June, adding nine or ten more chemo sessions bringing the total to around 127, again conservatively speaking.

In December, after diagnostic scans, the FOLFIRI part of the cocktail was stopped as not being effective anymore in addition to the side effects being too debilitating for Irene. She continued to be infused with Avastin only. Irene needed a rest over the holidays. The oncologist gave her a two month break to recuperate.

A positive decision by the Tumor Board, however, opened the pathway to try radio-embolization—theraspheres. It had recently been approved for colon cancer if metastasis was only to the liver and not more widespread. We scheduled the procedure for the spring of 2010 after extensive preparatory mapping exams and tests.

The foregoing summary through 2009 contains the essentials of the first 6½ years of Irene’s treatments. It includes her major surgeries: 18 inches of her colon removed; right lobe of her liver removed; and, the resection of her lower right lung. The remaining treatments, including the upcoming liver and related surgery, from 2010 to Irene’s passing, are more complicated and detailed, believe it or not.

Before I describe those years of 2010, 2011 and 2012, I wanted the reader to appreciate what Irene had endured to this point, so going forward her struggles would be fresher in your memory.

Hopefully, you can keep in mind all the pain and discomfort that she braved while you read the description of her battle and the extraordinary stamina required to deal with her situation from this point forward. For example, ask any one you know who has received chemotherapy, just how many hours-long infusions they withstood. The total number probably reaches nowhere near Irene’s total. I don’t have any idea what the record is, but Irene is surely in the running for the most ever. Consider all those associated side effects, too, including the emotional ones.

I noticed Irene was gradually weakening. I reminded her the Tumor Board approved her for radio-embolization.

“Tom, I’m getting really tired. Do you think this new procedure will work?”

“Yes, honey. Think about it when it does work. This could be the end of your cancer if they’re able to destroy that one last nodule in the liver. The doctors are even excited for you. The chances are in our favor. We could have many more years together. It’ll be a good time for us, honey, free of this disease. It could release us to be finally done with chemos, scans and the whole world we’ve been living in. We could have the longest treatment break ever.”

Irene reached for me with her arms extended. She beckoned with her hands.

“Please, gimme a big hug, handsome. I hope and pray you’re right.”

“Don’t worry, honey. We’re together.”

“I love you.”

Chapter Eight: However, after a few months, the TPN was making her nauseated, an occasional side effect of TPN, along with all the other usual side effects from the ongoing chemo sessions. That created yet another problem. The chemo might be interfering with the healing of those stomach fistulas. Irene was feeling very bad. Then something else happened…. 

Chapter Ten: As I previously mentioned, she had to have already had very certain kinds of treatments and symptoms to be included in that Phase III trial: colon cancer metastasized to her liver; a liver resection; and no discernible disease shown on scans after her liver surgery. Irene was elated when we got those scan results. … But in her case, the cancer returned. That study involved a control group and a placebo. That’s the normal procedure in Phase III studies. Irene either had the placebo, or the new drug did not have the desired effect in her case.  

Chapter Eleven: During the last night of her life, Irene lightly touched me with her left hand. In a very weak voice that pained me to hear, she said, “Tom”—that was all. …

… Today, while thinking about that final night months ago, I wonder if it might have been her last plea. Was Irene letting me know she felt her death approaching?  

Postscript: Everyone could learn from you, honey. Teach them now—through your book. Tell them how to live. Show them how to fight. Teach them how to die, Irene. Please…. 

… Will I be with you once more, forever? Please speak to me. 

… Yes, Tom. I heard your loving words as you held my hand. I am happy now and without pain.

 

[Please read the book so that you may complete your experience with Irene and me.
And, thank you, for taking the TIME (the greatest gift of all, as Irene would tell me, because it’s so precious to each of us) to read through “Inside the Book.” Thank you, again.Tom Cooney Jr.]