8/20/18
It has been a rocky three years with Cookie’s illness. Nothing could have prepared me for her death. I have felt very emotion known to man, almost on a daily basis. As bad as it has been, I am more fortunate then some. I have a large and supportive family. I have two strong daughters who were made that way by their Mother. I think that most people can count on family when things get hard, I know my family seems to know what I need before I do. Not many people can count on the support from such a large group of friends as I have received. Your support has not been for days, weeks or even months, your support have been unwavering for 3 years. I heard many times in the past weeks that people wish they had words to ease my pain. You have eased my pain not only with your words but by your actions. I wish I had words to make you understand how thankful I am and always will be.
Everybody deals with things different. For some reason I want to tell the whole story of Cookie’s battle. Since I have left the John Wayne phase of my life and entered into the Alan Alda phase I have no chance of doing that, so starting next week and I have no idea how many weeks it will take, at the bottom of our announcements I will write her story. This will give you the choice of reading it or not.
8/28/18
The best place to start a story is at the beginning so that is what I will do.
I was still in school working part time in a gas stations. I changed stations and went to work at Marathon located at 111th and Harlem, in Worth. I became friendly with my coworkers and one evening after work we went to hang out at his house. I followed him into the house and couldn’t believe my eyes. I didn’t even know he had a sister yet alone one stunningly beautiful. I have told people I knew she was the one for me the first time I saw her, that might have been a slight exaggeration. I only saw her briefly, she quickly exited the room. Later I found she did not think she was presentable to strangers. I can’t imagine what she saw when she looked into a mirror, I found her extremely presentable. To set the record straight it was the second time I saw her and spent a little more time in her presence I knew one day I would marry her.
She was very intelligent (that’s where our daughters got it from) unfortunately college was not something her family ever discussed. She could have been anything she wanted, she was that smart. I don’t know where her school counselor was at, he should have guided her. If she would have went to college we may never have met. It worked out in my favor.
It wasn’t too long before we were considered an item and then a couple. With school behind me I got my first full time job, driving a garbage truck. The work was hard, I hated the job but the pay was fair. I saved as fast as I could. It was already known to everybody that one day we would marry, the only thing to be determined was when. When I no longer wanted to be away from her I realized it was time to set a date. The date was set August 16, 1975. I saved enough to put enough down on a house that the mortgage payments would not kill us. We were just kids with no idea what was ahead of us. I worked at a job I did not like, lived in a house that was not a mansion. I came home every day to the girl of my dreams and a hot meal. That’s all I needed. More next week.
9/4/18
Cookie’s story continues:
Someone commented the morning of our wedding how calm I looked. I didn’t look calm because I was calm, why wouldn’t I be? I was certain in my choice and the only thing that would really change were the sleeping arrangements. We were already together for some period of time every day. Our first year of married life was as I imagine most first years are, blissful. We were young, in love, able to pay our bills on time, what else could we ask for.
Our life changed again just 53 weeks after we married, Nicole was born. I often tell people if we had Lisa first we would have not had any more children. Of course I joke. Birthing was different back then. There were no epidurals, fathers were not taking part in the birth as a matter of routine like they do now. I waited outside until they came and got me. When I walked into that room and saw Cookie holding Nicole I realized what she was called to be. She was meant to be a Mother. And a great mother she was. As great of a mother as she was she was no less a wonderful and supportive wife. She was always the strong one. When Nicole was still a baby and had roseola and the only way to break her fever was to ice her down, I stepped right up. This is what the Dr’s told us needed to be done. I was a tough guy I would do this. As I started to ice her down Nicole cried and screamed. It was obvious I was hurting her. I wanted to continue but couldn’t. I couldn’t hurt my baby. What this big tough man could not do that soft, weak woman did. She did what needed to be done. I learned a lot that day about a mother’s love and toughness.
Life went on. A couple years later we had Lisa, now the sides were even it was 2 against 2. We worked hard, me at a job and her in the house. All our parents were working people so hard work seemed normal, what did we know. We paid our bills and saved what we could. We didn’t drive fancy cars and only took a few vacations. She never complained. Looking back I wish we would have not bought more stuff but done more stuff. I’m not going to say we never quarreled, but I will tell you nobody ever left the house mad, slamming the door behind them. We never slept apart. I will pick up next week with another life changing event, the gokarts.
9/11/18
The beat goes on:
Life went on. Like with everybody, besides work there was grass to cut and snow to shovel. Cutting grass was no big deal you could schedule that. Snow on the other hand came when it wanted. There were times when after driving and working in it all day I dreaded going home to shovel. Somehow she knew my bad days and when I got home the driveway was shoveled. Not always, but on my rough days besides taking care of the kids, cooking and cleaning she found a way to shovel the drive. I was very thankful.
If you ever wonder about my email gokarts@juno.com or my license plate gokrts1 it is because for 20 years I was in the gokart business with a brother. We worked hard. I worked 7 days a week at the tracks. Cookie ran the house and did the bookkeeping for the business. She attending many school and family functions alone. Never once did she complain. I worked late every night, getting home between 12:30am and 3:30am. She was always awake and had a hot meal waiting for me. The next morning she would get up with the kids and often let me sleep in.
Things were going well and we purchased a second location. In a few years I would sneak home on Saturday in time to go to church with the family and sometimes even stay home enough to have dinner with them. Was it the life people dreamed of, probably not but it worked for us.
The Gokarts were seasonal from March thru October. In the winter I found work where I could. One year I went to work for Arcade Amusement. They wanted me to stay year round but I didn’t want to give up the Gokarts until Lisa finished high school. I attended all her cross country meets and would not have been able to if I worked for AA. When Lisa finished high school we sold the businesses and I went to work for AA. We knew our life would change and change it did but not for the reason we thought. Shortly after that Cookie found a lump in her breast. The Dr’s told us it was only a cyst. Up until the morning of the surgery they insisted it was nothing more than a cyst.
I believed in the Dr’s and Cookie believed in me. We arrived at the hospital confident this would be a simple procedure. As the surgery dragged on I became concerned. At some point her father and I were directed to a conference room. The Dr told us it was cancer and I cried. I had lost my father some time before so it was not the first time I cried, but this was different. When I was able to speak I asked what we will do next. Chemo and radiation was the answer. What was the outlook was the next question. Dr’s said very good. The lymph nodes were removes and showed no signs of it having spread. I believed in the Dr’s, she believed in me. Maybe that was why when I broke the news to her she never cried. The Dr said they could do chemo at Christ but I wanted the best I could find. At that time it was a Dr named Coubalt at Rush. That’s where we went. We took her to her chemo treatments. When they were over she went to Christ for radiation. As to not bother anybody she insisted she could drive herself to Christ which she did. Eventually the treatments ended and we went back to a normal life. I’ll pick up next week.
9/17/18
The beat goes on:
There is a story concerning Cookie’s last radiation treatment, which I will tell on Saturday
Cookie bounced back from the breast cancer and we went on with our lives. Nicole was just beginning her career as a teacher and Lisa was away at North Central College. I had sold the Go-karts and was working fulltime at Arcade Amusements. Things were going good and I had just finished a 10 mile race and enjoyed it so much I decided to look into a marathon. With Cookies full support I found a great group of runners and began training for the 1999 Chicago marathon. Late in the summer of 1999 our world once again was rocked.
I don’t want to get ahead so I will end this for the week. Cookies last treatment and what happened next go together and I will tell that story Saturday.
9/24/18
The beat goes on:
I came home from work one day and as I always did I kissed Cookie and asked how her day was. This day she said okay but I have a headache. I mentioned perhaps you should go see the Dr. Her reply was “I’ll be okay”. I asked what was for diner and she couldn’t remember what she put in the oven an hour earlier. The girls told me she’s been like that all day, she can’t remember anything.
We took her to the Dr. the next day. He didn’t see anything but suggested we get an MRI. The earliest appointment I could get was over two weeks away. I called a friend whose wife had some pull at hi-tech, got her in in two days. I took her to a 6:00am appointment. When the test was done I took her to her parent’s house on my way to work. That afternoon I called the Drs. Office for the results. When the nurse said hold on Mr. Werner the Dr. wants to speak with you, I swallowed hard.
The Dr. told me Cookie had a brain tumor they believe was the breast cancer having spread. After wondering what the use of the radiation and chemo was, I asked what we are going to do. His answer was “we are going to make her comfortable.” I disagreed and stated we will cut it out. The Dr’s. opinion was if it had spread to her brain it spread everywhere. I told him we will cut it out wherever it was. In his best Dr’s. voice he said “it doesn’t work like that, we need to get her to the hospital and get her started on steroids.”
I had no idea how to check somebody into a hospital but first I had to find the strength to tell Cookie the cancer came back. It was a short trip form my job and her parent’s house but my car did not go straight there. I found myself at my childhood home speaking with my mother and from her I found the strength I needed. It wasn’t far from Oak Lawn to Worth but before I got to Worth the word had spread and Heavens were besieged with prayers.
I walked in as upbeat as I could be, told Cookie the cancer was back and she needed to go to the hospital and rest a few days while we figured out what to do. It was the closest I ever saw her to breaking she said “I don’t want cancer again”. I said I know baby, I know. That was it, she never complained, whined or cried. We went home and got her an overnight bag and headed to the hospital. I still had no idea how to check somebody into the hospital but I didn’t need to. My mother volunteered at the hospital and when we walked in the red carpet was already rolled out.
The next couple mornings they started testing everything. It seemed to me like they were trying to find more cancer. Every morning they tested something else and every afternoon they reported to me they found NOTHING. After a couple days I got a call from a neuro surgeon. He told me that they can’t find any cancer other than the brain tumor. He said “I’ve seen the pictures, I think I can get it. I want to try.” All I said was Dr. sharpen your saw and get a good night’s sleep, I’ll see you in the morning.
I’ll pick up next week when I met the Dr.
10/3/18
The decision was made we would operate Friday morning. Thursday Father O’Mara came by the hospital and performed last rites. Not this anointing of the sick they do now, old fashion last rites. It was very moving, had me in tears but not Cookie. She was so strong through the whole process.
I got in a five mile run that day. I can’t explain it but that was the closest I felt to my Father since he passed away. Somehow I felt his smile and knew things would be okay.
Friday morning I met Dr Gianinio for the first time. He was a young good looking Italian guy. He seemed confident as we exchanged small talk. Then the conversation got serious. I informed him that Cookie was paisano of his. I told him her maiden name was DeGenova. I asked if he was married and he replied yes. Did you marry an Italian girl? No she’s polish came the reply. Does she at least cook Italian? He smile and said no. I promised him if he got cookie through the surgery I’d arrange the best Italian meal he ever ate. He said he would like that. We had a deal. I knew I could delivery I had Aunt Carmela on my side, I just hoped he could keep up his part of the deal.
I managed to keep it together as we wheeled her into the operating room. I summoned some of my old John Wayne, not one tear, only positive thoughts. A couple hours later as they wheeled her into recovery I caught a glimpse of her, they tried to stop me from approaching her but that wasn’t going to happen. She probably didn’t know where she was but she was awake and smile when I approached. I knew I better call Aunt Carmela. I never made that call I didn’t have to, later that day Aunt Carmela and Stella were in Cookie’s room when I walked in. I informed her of the deal I made and her reply was anything for Cookie. We just had to wait for the right day.
Dr. Gianinio was a surgeon, his scope was limited. We visited him a few times post operation. The date was set for our last visit and that’s when we put on feast. With our appointment in the late afternoon it was arranged I would bring lunch. When I walked in with the food the nurses told me they were glad I was there because the Dr. was coming out between each patient looking for me. I drop off the food and went home to wait for our appointment. We arrive a few minutes early like we always did waited for our turn for the Dr. He came in and was all business. When he was done examining Cookie he asked us to wait a minute, he had something to show us. He left and came back with an old black and white picture he had in a very nice frame. It was a little boy standing in front of an Old Italian restaurant in St Louis. He informed us that was him, in front of his father’s restaurant. He went on to say he had not eaten anything close to as good as what Aunt Carmela made since then. He joked saying he wishes we needed to come and see him again so he could get more food but his part of her recovery was over.
Cookie healed fast. Dr. visits became fewer and farther apart. She began to drive and run the household like always. My first marathon was approaching, Nicole was engaged, and there was a wedding to plan, no time for more sickness.
More to come next time.
10/30/18
I’m not sure if there is any interest left after a couple week layoff but today I’ll pick up on Cookie’s story.
The brain surgery went well and as far as we knew so did the radiation treatments. Cookie got stronger and in no time was back running the house and helping plan a wedding. It was suggested that we move the wedding up just in case but Cookie would have none of that.
It was a nice wedding, the bride was beautiful and even the groom looked ok. The date was October 7, 2000 and I was nearing the end of my second training season. Yes I got my long run with the group in before the wedding. I was the bride’s father all I had to do was show up. The Chicago Marathons were at the end of Oct back then, before Carey locked into Columbus Day weekend. Weather was much better for running then.
Nicole was married, Lisa was away at college if you can call Naperville away. We were almost empty nesters. It didn’t take too much getting used to, each day I came home to Cookie. If I was not running with the group I went directly home and got a kiss before I put some miles on. When I finished my run another kiss, shower and dinner. It just seemed normal to me. Only now do I realize how, we were living the American dream.
2001 Lisa graduated from North Central College and moved back home. She started teaching the next semester, life was good.
On March 26, 2003 once again our life changed, this time for the better, Ava Grace was born. We became grandparents. As great a daughter, wife, and Mother Cookie was, somehow she still kicked it up another notch when she became a grandma. After several weeks Nicole went back to work and Cookie found her true calling. NO BABY was taken care of better and loved more then Ava Grace. Even I couldn’t hardly be with her without holding her. Cookie had her all day so she gave me my turn when I got home from work. Nicole is a teacher so she had plenty of time off so Cookie would take care of other things that needed her attention.
The months turned into years and on January 29, 2006 Zachary Thomas was born. After two daughters and a granddaughter there was a boy in the family. Ava was growing and seemed to like Zach at least at that age. Lisa had moved out but our home was still filled with life and love. Until you become a grandparent you can’t really know what it is like. I don’t think it changed Cookie much, she was always kind and compassionate, but it changed me. Goodbye John Wayne hello Alan Alda. There was nothing Cookie wouldn’t do for those kids and I wasn’t far behind. I never spoiled them quite the opposite, I became the disciplinarian. Somehow they knew just by a look I gave them they better behave and they did. They listened better to me than their parents. It was all good.
Holidays came and went, traditions were set mostly around family. I was aging and Cookie must have been too but you’d never know it by looking at her. She looked as young and beautiful as when I first saw her. It was father’s day 2010 I was out for an early morning run and Cookie was up making her delicious baked beans.
11/11/18
The story continues: I knocked out a quick 5 mile run, stuck my head in just long enough to tell Cookie I was walking to the park to stretch. The park was directly behind our house. I stretched using the picnic tables. As I was stretching I heard an ambulance close by. I watched curiously as it passed one house after another on our street. It was odd that it never cleared our house. I felt bad thinking something must have happened to our neighbors across the street. After a short time I decide I’d walk over and see what was wrong. A short distance into my walk it crossed my mind what if something was wrong with Cookie. My walk became a sprint with a hurdle over the split rail fence around our back yard. I turned the corner into the front yard and they were wheeling a stretcher up my sidewalk. What’s the matter I asked as I burst through the front door in front of them? I was told they received a call about somebody in distress at this address. Cookie was sitting at the table and at first looked seemed okay. I told the EMT’s they had the wrong house. They wanted to examine her anyway. Her answers to their questions led me to believe something was not quite right. Shortly our daughters arrived. They had spoken with Cookie to make final preparations for our father’s day cookout. Her speech was garbled and answers did not make sense. They called 911 and headed to our home. We took her to Palos Hospital and they did a host of test. We were told there was something in her brain that needed surgery. Oddly it was not on the side that should have produced her symptoms.
Palos had discontinued their Neurology department, they suggested Rush hospital. Arrangements were made and a surgical team was standing by for our arrival. We arrived and Rush ran their own test and told us they did not see anything wrong. Cookie’s mental state was back to normal by now. They kept her for a couple days running more test but found nothing conclusive. Who would you have believed a local hospital or Rush Medical center? We believed Rush. Cookie came home and things quickly went back to normal.
Once per years for several years Cookie would have similar episodes. They were described to us a TIA’s. When asked how they knew that’s what they were we were told because everything else was ruled out. These are minor strokes with no lasting effects. They were very scary and we were told they could be sign of a larger stroke coming. Each time she bounced back quickly and we went on as before.
I remember one particular episode that started like they all did. I got her into the car and off to Silver Cross we went. As was the case most times, her symptoms came and went quickly. When I pulled into the emergency room she seemed fine and pleaded for me to just take her back home. After much discussion I gave in and back home we went. The next days came and went and it seemed apparent we did the right thing. Our girls did not agree with our decision but what was done was done. The following week another episode and off to Silver Cross we went. This time she was not recovering as before. Things seemed different and I was worried. The MRI showed a mass on the right side of her brain. The Dr’s went around and around and came to believe it was a tumor. We spoke with the surgeons and they told us the cancer was back. It was in a good spot and could be cut out with minimal damage. Oddly enough it was in the exact spot Palos Hospital told Rush medical center years before it was, only by now it was larger.
The afternoon the day before surgery the girls were with Cookie, I was on my way to the hospital when they called me and told me Father Stan was there to anoint her. I was only minutes away and made it in time to see Father Stan. Father Stan said he had a special blessing but only knew it in polish. I told him please go ahead I was pretty sure God spoke polish too. As he was talking to Cookie she told him point blank she didn’t care what the Dr’s said, it was not cancer. I walked him to the elevator and told him the Dr’s were sure it was cancer.
The surgeon assured Cookie he would cut her in a way to do little damage to her hair. It was always her hair she seemed worried about. She went into surgery early the next morning, with us all waiting and getting more anxious as time passed. Finally the Dr’s came out and told us it was not cancer but an AVM. Which is a bunch of veins that got tangled and started a bleed. She was right, the Dr’s were wrong. The surgeon did a very nice job with the cut and hid the scar very well. Cookie was pleased. Once again she came home and we went on with life.
12/11/18
he beat goes on: With the events getting closer and closer it had become obvious that Cookie would not be able to care for Ava Grace and Zachary Thomas any longer. Cookie loved them so much she didn’t want to let go, but it was time. This hurt her as much as anything she had been through. When she hurt I hurt but it had to be done we all knew that.
Her next event raised the level of concern to a new level. It started like all of them and I expected it to end like all of them, but I was wrong. The Dr’s could not get her out of it. They said this was a seizure but not like you think. It all took place inside her brain with no outward signs. They tested her for everything and tried everything. I remember standing with the girls next to her as the Dr’s talked. I knew they were concerned and I asked if this could be life threatening. The answer was, we’re trying to prevent that. Before the girls called their husbands I got a call from a brother who did not inquire about Cookie’s condition. All he said was to hang in and he was on his way. Not sure how he sensed this one was different. It was a long night, we hugged and cried. When morning broke she came out of it. The damage was more than normal both physically and mentally. She was able to function and with a quick glance outsiders may not have noticed. Her physical abilities declined and the Dr’s at Silver Cross had no answers. On Mother’s day 2015 our whole family was at the farm and it became obvious we needed another set of eyes to look at her. We went in the house and got on the computer and found Dr Elizabeth Gerard at Northwestern. During our appointment Dr Gerard agreed something was wrong and we needed to get to the bottom of it. We scheduled the test she suggested. We did not make the scheduled test. Jackson was just months old and was visiting with Lisa. I helped Cookie to the floor so she could play with the baby. I helped her back up when the visit ended. As we got ready for bed Cookie could not walk. I called the neurology department and got the on duty Dr. He suggested we bring Cookie to the emergency room. Before I could get her upstairs and ready to leave she improved. We decide to wait until morning and see what happened. Several minutes later I got a call from Dr. Gerard who we had met only once. She strongly urged for me to bring her in. She said it was possible that Cookie could forget to breathe during the night. I loaded her into the car and off we went to Northwestern Hospital. It was about 2:00 am on Thursday when we got there. Over the next couple days they did every test known to man. Nothing certain was discovered but her condition continued to improve. That Sunday was Father’s day, her father came up and we had pie. It was Baker’s Square not the pie she baked for us each father’s day. It would have to do. The following day she was scheduled to go to the rehabilitation institute of Chicago, the finest rehabilitation facility maybe in the world. I couldn’t be happier. I asked when the transfer would take place because I did not want her being transferred alone. Midafternoon was set for transfer.
My coworkers made sure I was off in plenty time. I was feeling good, my babydoll would be getting intense therapy and come home better then she had been in some time. Those were my thoughts. I turned the corner of the hallway and approached her room when I was intercepted by a nurse. She asked me to wait for the Dr. Something didn’t seem right. I said of course I would wait for the Dr in my wife’s room. She actually tried to block me, that wasn’t going to work. As I entered the room I saw my baby lying in bed appearing to be sleeping. They claim she was not in a coma because if you scratched her feet she would respond. But there she was unable to be woken, talk or move.
This is when it got real June 2015.
12/17/18
Below is something that I felt many years ago. It has become my Christmas card to all of you since then. The closer it gets to Christmas the harder it gets. The words are still true but the new morns are a bit less glorious without Cookie with me.
I left for work like most of you today in the dark. By the time I got home it was once again dark. It can be hard running this time of year you have to be careful. I was feeling a little down and what better way to shake the blues then to go for a run. Out into the dark I ran. I had hardly run ½ mile when I realized what a perfect night it was for a run. The winds were light, the temperature was mild, the sky, the sky was so clear the stars sparkled like diamonds. I did not notice the miles gliding by instead I noticed the lights and decorations of the season. They brought me back to my youth a more innocent time when with great anticipation I waited for Christmas. I thought about how the world has changed for the better and the worse. Then I thought about the one thing that will never change. That thing is at the darkest time of the year a great light has been given to the world. That light is the reason we celebrate, that light is the reason we have hope that things can be better. That light is Jesus. I hope your running is going well, I hope you get everything you wish for, and mostly I hope and pray somehow peace can come into our world.
May you have a joyful Christmas and a blessed New Year.
Let me close with the words of my favorite Christmas carol: The thrill of hope, a weary world rejoices, for yonder breaks a new and glorious morn.
Remember each dawn is a gift. Use them wisely.
12/26/18
The Dr’s were at a loss. They tried everything and did ever test. They could not come up with any answers. They asked me if they could test her for STD’s. I told them absolutely, if that was the trouble we could treat her and when she was well we’d discus how she got them.
The hours felt like days, days like weeks and weeks like years. As bad as it was it was not the darkest time. I still had believed the Dr’s would find the problem and be able to solve it. For the next five months with very few exceptions I was working, sleeping or with Cookie. The only bit of normalcy I allowed myself was Saturday mornings when I join my runners. I had stopped running but came out for the therapy.
I had got to know most of the nurses in the ICU, they seemed to be caring people. Cookie laid there for many days with no sign of life. I held her hand, talked to her, play music nothing seemed to get her out of whatever state she was in. Every day as I arrived I found our nurse for a report and every day it was the same “no change”. Then one day she opened her eyes and I was there, word spread like wildfire. The first thing anybody who was not on duty asked when told was “was joe here?” They seemed happy I was. At first she was awake only minutes at a time a couple times per day. It was during this time on a Sunday as I sat waiting for her to wake when Karen and Sig, Mel and Deb, and Steve and I joke whoever his girlfriend at the time was walked into her room. Looking back I’m not sure how they got into ICU but I wasn’t thinking of that at the time. While they were there Cookie woke and of all the quality people in the room she spoke to Steve. I’m sure I cried, not because she spoke to Steve, actually I’m kind of fond of him, but because she knew who he was. At the time that was a big step.
Ever so slowly she improved, she was awake more and more. At some point she started to move her right leg and eventually her right arm. We still had no answers but some progress was being made. We started hand feeding her. I would go to the Saturday evening mass at Holy Name and race back to feed her her dinner. The Dr’s started talking about medical being unable to do anything else. It started coming clear our days at Northwestern were numbered. To get into R.I.C. (rehabilitation institute of Chicago) she had to demonstrate a certain level of physical ability. We bribed her with her favorite candies to get her to move her hand from lap to mouth. I filmed it on my phone to prove it. We got her drinking from a straw in a cup. The morning of her evaluation we pumped her up with coffee. They begrudgingly accepted her. If we had to leave the hospital R.I.C. is where I wanted her.
When we left the hospital we still had no answers as to what the problem was or what the prognosis was. When I asked what I could expect in the future all they told me was they had no ideas. I was told they had no reason why she lived through what she had already lived through so they had no ideas of what lie ahead.
I will pick up at R.I.C. next time.
1/1/19
We got Cookie into RIC which is where we wanted her. It was not easy, I got the sense RIC wanted only slam dunks, and Cookie did not fit that profile. Nobody knew how it would go. They, the nurses and therapist as well as the Dr’s seemed to know what they were doing. Each day they got Cookie dressed and using the hoist got her out of bed. Slowly, ever so slowly she made some progress. I remember like it was yesterday the first time she was able to bear a little weight. We stood her up from her wheelchair had her grab bars and shifted some weight from the lift to her legs. As the days went by she improved slightly. From the middle of June until late August we were either at Northwestern or RIC. In August the Dr’s started pushing to discharge her stating she was not improving. I argued and fought with all the therapist and Dr’s fighting to get as much therapy as possible. Soon I was told we had to find another place for her. I was not done fighting, I had nothing to lose. I got one extension then another. When time was running out I demanded a meeting with the Dr’s and the heads of all the therapy departments. This bought us a few more days. During the meeting they had to agree she was making progress albeit slowly. The problem was she could not remember from one day to the next. It was like starting over each day they said. Cookie’s issues were never muscular they were neurologic. Her muscle were strong enough but the brain was not telling her what to do.
I have mixed feeling about RIC. While we were there Cookie was cared for very well. It is as much a hospital as a rehab center. It was clean and well maintained. Cookie was kept clean and well looked after. I knew she would not receive that level of care no matter where we took her. I sent the girls to several nursing homes and they reported back to me. I knew I was asking them more than they could handle. The final decision fell on me. I did not want to leave Cookie to visit homes but armed with the information they gave me I only had to look at a couple places. We chose Mother Theresa in Franciscan Village in Lemont.
At some point between June and August in a moment of weakness while speaking with Nicole I mentioned how lonely it was day after day. My runners had already stepped up with meals and getting my grass cut weekly. Nicole must have mentioned my comment to her Uncles because my brother Bruce started coming to the hospital most weekdays. I never cried in her presence but each day as I left her room I cried most the way home. My brothers were with us when we moved her from RIC to Mother Theresa. I rode with Cookie, they went ahead to make sure her room was prepared and to set up a TV. At RIC we had brought a DVD player and each day as I left I put on one of her favorite movies. I think it helped me more than her, it made me feel she was occupied for a couple hours. The nurses turned it off and packed it away when the movie was over.
When moving to Mother Theresa I expected some kind of a welcoming committee upon our arrival, boy was I wrong. It almost seemed they did not even know we were coming. The next couple months became the darkest of my life. I’ll relive them next time.
2/25/19
It was a Sunday the day we moved Cookie. My brothers went ahead and even saw Yankee Runners “Biking the Course” as they left R.I.C. I went in the wheelchair accessible medic car. I told Cookie we were taking her to another hospital closer to home. I’m not sure what she understood. We arrived and found our room and tried to get her settled in. She was in a two bed room but had no roommate. That was a promise the administrators gave me, to keep her alone as much as possible. Our daughters were waiting for us when we arrived and made it as pleasant as they could for their mother. Nobody could make it pleasant for me. I accepted the fact that this was something we had to deal with.
At one point as evening drew near and my brothers had to leave I walked out of Cookie’s room and overheard a brother warning Nicole and Lisa that I would go to pieces when I had to leave. Though I tried to think positive and even was assured of the treatment we could expect, he was right. It was brutal leaving her. Truth be told it never got better. I cried every day for months.
On Monday I spoke with the head of therapy and she gave a glowing assessment of Cookie and I was told she would be able to do stairs in our home when they were done with her. Until then I hadn’t even let myself dream of getting her home. The administration knew of every penny we had and how long it would last once the insurance ran out. The insurance would last as long as he was getting and able to take part in therapy. In the beginning there was some improvement but then the decline started. In weeks she declined to being unable to pick up a spoon and feed herself. Since she could no longer participate in therapy the insurance cut her off. I began paying out of our retirement. I went to see an elder care attorney. We spoke of ways to try and shelter some of our savings. Once bankrupt we would have to try and get Cookie into the best Medicaid home we could find. It didn’t take long for me to realize there was no need to try and hide money. I could never let Cookie go to a Medicaid home if I had any money left.
No Doctors we had encountered from the very beginning could tell me what to expect. It was a neurological condition that affected her brain, I assumed her brain was dying. There were times I didn’t expect her to live through the week. I was speaking with the nursing home Dr. on a regular basis and informed him of her past problems with UTI’s. He assured me he had tested for that. We decided to do another scan of her brain. I needed to know what to prepare for. I called Northwestern and asked if they would look at the new scan since they had the most experience with her previous scans. Dr. Gerard informed me Cookie should not have declined that quickly and I should bring her to the hospital to make sure something else wasn’t going on.
The next 11 days play as important role in the whole process as any days until then. I will pick up there next time.
3/4/19
The next 11 days played a major role in how the following months and years played out. After speaking with Dr. Gerard’s office I decided to take Cookie back to Northwestern. Nobody thought this was a good idea except Dr. Gerard and myself. The question of why came up from many people, people who only had my best interest at heart. I decided I had to give her one more chance, maybe just maybe something would show up that we missed.
Once the decision was made I had to figure out how to do it. I called Mother Theresa and was told I needed the Dr’s permission to move her. I tried repeatedly to contact the Dr. with no success. I called Mother Theresa numerous times telling them of my issue. They called the Dr. with no luck. It was a Friday and time was running out. The home called their head of Doctors and she refused to release Cookie, stating her vitals were all good there was no need to send her to an emergency room. I spoke again with Northwestern at 4:45pm and I told them I would be bringing Cookie in. In my state of mind at the time I thought the home would stop me from taking Cookie. I did the only thing I could think of, I called out the Brothers. Told them to be ready to meet me at the home. At that time I was prepared to take her by force if need be. When I got to the home things became clearer. They would not physically stop me from taking Cookie but if I did against medical advice they would not take her back if Northwestern did not admit her. I went round and round with my favorite nurse who assured me Northwestern would not admit her. She said all of Cookie’s vital signs were fine and the testing could be done as an outpatient and when Northwestern did not admit her I would have to take Cookie home. I was scared, I knew I could not give Cookie the care she needed at home. After much discussion I backed down and left Cookie in the home. Early Monday morning I called Dr. Gerard’s office explained what happened and apologized. They were so understanding and immediately starting working on getting approval from the home. I was feeding Cookie dinner when I got word that after speaking with Dr. Gerard the nursing home Dr. agreed to let Cookie go to Northwestern. The home still told me Cookie would not be admitted but with approval, which we had, I could bring her back.
I had no idea of what to expect but off to Northwestern emergency room we went. They did all the test I expected. The emergency room Dr. told me they had no answers but Cookies condition did not seem to require admittance. I asked if he had spoken to Dr. Gerard and he told me he was just about to do that. Before speaking with Dr. Gerard he was sending us back. After speaking with Dr. Gerard he was getting a room ready for us. They admitted Cookie, found an UTI that was not being treated or not being treated properly, even though I had mentioned this to the nursing home Dr. Dr. Gerard kept Cookie in Northwestern hospital 7 days for an UTI. She wanted to make sure Cookie got a full dose of the proper antibiotics she needed. They gave her the antibiotics through an IV. When Cookie arrived she could not pick up a spoon. Seven days later she was feeding herself. It was a bit painful to watch but she did it. It was then I knew I couldn’t leave Cookie in a nursing home.
Next time I will pick up with the battle to get Cookie home.
4/1/19
It seems to me that I wrote the next chapter but can’t seem to find it. I might have wrote it but never attached it to my announcements. If this is a repeat let me know if my memory has changed any in the past couple weeks.
The only way I could get Cookie home was to keep her UTI free. That meant keeping her clean and dry, which I did while I was there. I’ll go to me grave believing everybody at Mother Theresa wanted Cookie gone because they were tired of me. I don’t care of their reasoning, I used it to our advantage. We made a chart that the CNA’s had to fill out. They had to toilet Cookie every 2 hours and sign the chart.
I began interviewing home agencies. They came to evaluate Cookie and all told me they could care for her in our home. I started getting the house ready. We had wheelchairs, commodes, and walkers on every level in the house. We had a stair lift installed that took Cookie from the family room to the kitchen and from the kitchen to the bedrooms. I wanted her to be as much at home as we could make her. I wanted her sleeping in our bedroom.
We chose the Synergy agency out of Lockport, a decision in hindsight that proved to be right. With Synergy came Lorna. Day by day Lorna taught Cookie how to do more for herself. It took a long time but Cookie would remember things eventually. She was never able to entirely dress herself but was able to help us. As time went on Cookie became able to support her weight and with a walker even able to walk short distances. I could get her into our car and was able to take her out occasionally. Mostly we went to church. Some days were better than others and sometimes with her walker she walked into church but I had to carry her out. There did not seem to be any rhyme or reason so we just had to deal with it. As much as she wanted to she wasn’t able to do much in the way of helping around the house. I started learning to cook and even learned to do laundry. Lorna was occupied taking care of Cookie so I had to take care of myself more than I ever had.
With Lorna watching Cookie I was able to begin running again, not very well but at least I was running. We tried to find our new normal as best as we could. Cookie was stable and we had routines worked out. Life wasn’t what we hoped for but whenever I felt sorry for myself (which I did from time to time) I would look and did not have to look far to see people worse off than us. The weekly DR’s appointment became less frequent as we settled in for what we thought would be a journey that lasted decades. I budgeted our money as best I could. I wanted money left to care for Cookie when I was gone, I didn’t spend much.
Things were going along, we went to church, family events and even to a restaurant occasionally. I worked a full-time job and I had a side job on my off days, throw in my running and I was pretty busy.
The next milestone was a Monday in February 2018. I was working my side job when I got a call from Lorna’s relief. Cookie was having stroke like symptoms. We’d been there before. I call Dr. Gerard at Northwestern on my way home. I was directed to take her to the closest hospital in case it was a stroke. I arrived home and loaded Cookie into the car and headed to Silver Cross hospital. In-route to the hospital I got a call from Dr. Gerard’s office telling me to have Cookie transferred to Northwestern. I turned the car and headed to Northwestern.
I’ll pick up here next time.
5/6/19
After seven days at Northwestern we took Cookie back to Mother Theresa and I started working on getting her home. I set up evaluations with three at home agencies. They all said they could care for Cookie in our home. I orders wheel chairs and commodes for each level of the house. The biggest thing I had to do was to get the stair lifts installed. The nursing home was cooperating very well. They wanted to be done with me and knew the only way to do that was to get Cookie back home.
As the time neared I was scared. I hated the nursing home but still had no idea if we could care for Cookie at home. I heard all kind of things about caregivers, not all of them good. I had cameras put in that I could watch from my phone so I could watch and make sure Cookie was getting the attention she needed. I had chosen an agency and Lorna was going to be the primary caregiver. One of my biggest fears was making sure Cookie got all her medicine. She was on so many pills I wasn’t sure how to keep track of them all. We had a pill box that had room for pills 4 times per day for a week. Keeping her meds straight turned out not a difficult as I feared.
Lorna met us at the nursing home on the day we were bringing Cookie home. We loaded her in the car and we headed home. Cookie did not seem overly excited which I didn’t understand. It was as if she didn’t believe she was going home. In fact she just didn’t understand what was going on. As challenging as the first few weeks were I never regretted brining her home. It was nice coming home after work instead of going to the nursing home for several hours each evening. It would be easier for the kids and the grandkids to stop by and hang out a bit.
For the next three years there was never a normal day. Each day was unique. Some days she needed her wheelchair some days her walker. There we even days when for short distances she could just take my arm. We were able to do some things outside the house, mostly church and school activities the grandkids were involved with.
Through it all she never got bitter or resentful. She still hope one day to be able to run the house like she had for decades. She looked forward to being able to drive again. I did nothing to dampen her dreams, in fact I told her when she was able to drive I would buy her a Cadillac.
Cookie being a night owl and me getting up at 4:15am for work presented some challenges but we made it work. I would go to bed before her but every night would rise to help her to bed. The caregivers were not used to this. Mostly they cared for old people who wanted to go to bed early not for someone like Cookie who liked to stay up late. Cookie never wanted to bother anybody, she would tell the caregivers to just go to bed she would be fine by herself. She believed it though we knew better. We worked out bedtimes that changed over the years. The caregivers always stayed with her until she came to bed at the arranged time. Often times that time was still too early for Cookie’s liking. We never fell into a routine but did learn to adapt and overcome whatever issue came up that day or week.
The next game changer happened in February of 2018. It was a brutally cold Monday I was helping a friend hang a banner outside a building when I got a call from the caregiver. Cookie was confused and did not remember her daily routines or names. This caregiver had never seen Cookie like this and was panicked when she called me. I calmed her down and told her I would be home in 20 minutes. On the way I called Dr. Gerard’s office and was told to take her to the closet hospital in case something was going on. I got home and loaded Cookie in the car and headed to Silver Cross. Before I hit I-80 Dr. Gerard’s office called back and told me DR. Gerard wanted Cookie transfer to Northwestern. That would be easy instead of going west on I-80 I headed east, straight to Northwestern. They did all the same test, no sign of stroke or seizures. Dr. Gerard told them what to expect and made sure she was admitted. We knew from past experiences she would improve slightly before crashing. This would just be another inconvenience and we would get her home again. They made it clear she could not spend months in the hospital or weeks at the Shirley Ryan Ability Lab (the former RIC). Cookie improved and we moved her to Shirley Ryan. We started looking for another short term rehab center. I learned there is a huge difference between a nursing home and a short term rehab facility, though most nursing homes claim to be both. We chose Victorian Village in Homer Glen. I’ll pick up here next time.
5/20/19
I would not leave Cookie alone one second more than I had to so I had never seen Victorian Village. My brother went to check it out and told me I would be happy with it. I took his word and the arrangements were made. The day came I took Cookie in my car. We could have cared for her at home it would have been challenging but it was doable. Thinking long term I wanted as much therapy as we could get. Two weeks more seemed not too bad. The closer we got the slower my car went, I didn’t want to turn her over to anybody. I knew what had to be done. We arrived and like Mother Theresa there was no welcoming committee, but there was a different feel to this place. This was a short term rehab facility not a nursing home. I will admit it was not too bad. No matter where you are at, it is the CNA’s that make the difference. Even at Victorian Village there was a difference from one day to another depending on who was working. The food was good and I was allowed to dine with Cookie when I got there in time. The therapy was good, I was more convinced we made the right decision. Two weeks came and went quickly and Cookie’s stay was extending for one more week. She would be discharged on Holy Saturday. Being Easter weekend I told the caregivers I would care for Cookie alone so they could spend Easter with their families. We were invited to Nicole’s in-laws for Easter. We gladly accepted. I had been taking Cookie out for many hours each day I was not working. As long as she was at the home for her medicines the nurses were fine with it. Cookie was doing well. On Holy Thursday Nicole picked her up and took her to get her hair done. I arrived just as they were returning to the home. Everything went perfect, no problems. Cookie was coming down with a cold but all she cared about was getting her hair done. We were looking forward to Saturday. I arrived after work on Good Friday and Cookie was not eating with the other ladies she had got to know. She was slumped over sitting at the nurses table. I quickly inquired what happened and nobody had any answers. She couldn’t walk, was back in diapers, in short my worst nightmare. Nobody with any authority was at the home. Not only was Cookie scheduled for discharge her room was already booked the next night. I didn’t know what to do but decided to take her home in the morning as scheduled. The next day was challenging but we got her home and settled in. I called Nicole and told her we would not be able to join them for Easter. I got Cookie fed, cleaned and settle into her chair for the evening. I went to the Easter vigil as was our custom. I got home, we watched a little TV and went to bed. We woke Easter morning and Cookie was much improved. I didn’t believe what I saw but was thankful for it. We decided we could join Nicole and her in-laws for Easter dinner.
We arrived and were faced with four stairs into the house. We approached the stair expecting Cookie to need much assistance. She grabbed the rail and went up the stairs far better than she had in three years. I looked at Nicole as she looked at me. I threw up my arms in disbelief and said I can’t explain it. Dinner was good and the company was better. Time came to leave, there were hugs, thank you’s and even some tears. It was like an Easter Miracle.
With the caregivers back we settled into a routine much like before. We were able to get Cookie approved for some outpatient therapy at RIC in Homewood. I was in favor of all the therapy we could get. A couple times per week for a couple weeks we took her to Homewood. Therapy ended and we went back to what had become the new normal.
Things were going like I expected them to go for many years, not great but manageable. In July while I was at work I got a phone call from home. I always hated calls from home. There were never good news and this one was no exception. Cookie was having another episode and I was a long way from home. I called Nicole and she was able to get to our house and access the situation for me. Her report was not encouraging. I called a brother who could get there before me to help Nicole get Cookie in the car and headed to Northwestern. I told Nicole I would meet them at the hospital. They beat me there by about 10 minutes. As I entered the ER I saw them going into the triage area. The nurse would not let me join them. I’ll pick up here next time.
5/29/19
I arrived at the hospital just minutes behind Nicole and her mother. I was promptly told that I could not find them but to just have a seat. Being a guy who respects rules I sat down. That only lasted about 3 minutes, what could they do to me. I got up and walked past the counter the receptionist was seated at. I entered the triage area and quickly found Nicole and Cookie. Regardless of what the receptionist told me the Dr. immediately started asking me questions only I knew the answers to.
Cookie looked at me and smiled. The Dr. asked her if she knew who I was. Through all she had been through whenever she was asked that question she always indicated yes. Many times she wasn’t able to say my name but she always claimed she knew who I was. She looked at me smiling but said no. I’m not sure how, but I never cracked in her presence, I always stayed positive. I’m tearing up writing this but at that time I said that’s okay babydoll, I’m the guy that loves you the most. We got a room in the emergency room pretty quick where the Neurologist tried to make sense out of what was going on. More of the same test they took every time. With no answers, we were admitted into the hospital. As was normal she slid into a state of unconsciousness. More Dr.s, more test no answers. At times she seemed to recognize us. Nicole and Lisa came up one Sunday and claim she looked sad to them, something that we never saw before. It was hard to tell what she was feeling. She couldn’t move or speak. Her only food intake was through a tube.
The Dr.s brought up palliative and hospice. I wasn’t ready for that discussion. We had been here before and she always improved. Dr. Gerard told us the episodes were getting closer and more severe. The Dr’s tried not to lead us in any direction but it was clear they thought this one was bad. She would never be able to swallow. To keep her alive we would need to feed her through a tube forever. Whether I was ready or not I needed to consider hospice. The girls and I talked and cried every day. I knew what she said about living like that when we spoke about it when we were younger, but how could I be sure she wouldn’t change her mind under the current circumstances. Would she be able to move and talk in the future? We discussed it as a family but the final decision was mine alone. I changed my mind by the hour. I spoke with the hospital chaplain and our parish priest looking for guidance. I didn’t get much. Our parish priest told me we had no moral obligation to keep her alive by those means. I set up a meeting with the palliative care people at the hospital and cried some more. We had a meeting at my house one night after I got home from the hospital and after much discussion and many tears I thought the right thing to do was to keep her alive until the next episode. I went to sleep thinking that was the proper thing to do. The next day my daughter called and set up another meeting late night. She laid out why what we thought was right just 24 hours earlier was wrong. We were keeping her alive for us not for her. Still, I wasn’t ready to let her go. We had a Friday meeting with all the DR’s and the palliative and hospice people. A decision would have to be rendered then.
Dr. Gerard made a point of attending and leading the discussion. We were already told the latest MRI showed some changes but did not know before the meeting what the changes were. I asked what her final days would be like if we stopped all medicines. I told the team we were leaning to letting her go. Dr. Gerard then showed us the images from the MRI. During her stay at Northwestern hospital Cookie had a stroke. She would never talk, swallow and never get any movement on her right side and nobody could say anything about her left side and what cognitive abilities she would or wouldn’t have. I was told her last days would be peaceful and pain free. As hard as it was it was time to let her go.
We got hospice involved, set up the house with all the right equipment. I called the agency and said I wanted two caregivers for her final weeks. We brought her home on a Sunday.
I’ll pick up her next week.
6/2/19
I was amazed at the speed the equipment was delivered and set up. I made the final decision after meeting with the DR’s on Friday and on Sunday we brought Cookie home. I will be the first to tell you our first 24 hours were not what I was promised. Peaceful and pain free was what I was promised. I don’t think Cookie was in pain but she was very restless. I was very careful not to over medicate her. I did not want to do anything to speed up her passing. I’m carrying enough guilt as it is. The nurses got the medication dosages correct and things got better for Cookie and therefore for me. Cookie slept most of the time. It became obvious to me that I had two choices let her sleep or have her in some degree of not pain but discomfort. Seeing her in any discomfort was not acceptable to me, so we let her sleep most of the time. The caregivers where nothing short of amazing, not that they had much to do. Cookie slept mostly and had a catheter in but it gave me comfort knowing Cookie had them if the need arose. They prayed with us like Cookie was one of their own.
The house was full of love and yet there was unimaginable pain on all who stopped by. I saw rocks crumble as they look at and spoke to a sleeping Cookie. How could a quiet girl like Cookie have such an impact on so many people? I don’t know but she did. Perhaps it was what we took for granted, her kind and gentle nature. I’m pretty sure nobody ever spoke ill of her, why would they.
After a few days her breathing got raspy. I was sure that night would be the night. It wasn’t she was not ready to go yet. A few days later I had just given her, her midnight medicine and told the caregivers I would be up to give her the next dose around 4:00 am. Shortly after 1:00am I heard some movement downstairs and I knew she was leaving us. I made some calls and held her hand as I waited for the kids and her family to arrive. It seems odd to me, that was not as bad as the Friday when I made the decision to let her go.
The hospice nurse arrived and went through the protocol. We got Cookie dress in some very cute pink terry cloth pajamas and waited for the funeral home. They arrived and showed Cookie the utmost respect and dignity as they took my babydoll out of her home. The arrangements were already made. With Lisa giving birth on Monday we had no choice but to hold the funeral for a week. It all worked out.
It is my opinion that Cookie had quite a send off. We did things as we thought she would have wanted. The day was filled with tears but also laughter as stories were told. Some of them were even true.
I won’t make Cookie in death something she was not in life. She moved no mountains, she built n o empires. She chose a much more difficult path to follow. She chose to be my wife. That could not have been easy.
It has been 10 months since she left me, but is she really gone? I say no, she lives on in her daughters and the grandchildren she helped raise.
Next week I will write the final chapter.
6/9/19
How do I write the end to a story I never want to see end. Ten months, seven days and 18 hours ago from the time I’m writing this, my heart was pierced. It was pierced in a way I could never have imagined. Even in the final days when I knew what was coming I never imagined how it would be. Talking with a friend it was mentioned, it seems like just yesterday and yet forever ago. I miss her and think of her EVERY day. I’m sure that is not unusual. We were 14 days short of 43 years. I always felt sorry for people who talked negatively about marriage. I would think how unfortunate they were that things didn’t work out for them. It made me realize how lucky I was that Cookie agreed to marry me.
I am often tortured, not by what we did but by what we never did. She deserved so much more than I gave her. We took a few vacations, too few. She had a few new cars but not nearly as nice as she should have had. We should have seen more concerts and ate at better restaurants. She deserved to live better than we did. She didn’t dress as well as she should have. That was not completely my fault. She wore few cloths because she didn’t like the way most made her look. It didn’t matter to me because she was beautiful in whatever she wore. Cookie was everything to me. She was a friend and a lover. She could be trusted with my deepest thoughts and she supported my craziest dreams. She was not only the mother of my children but she was a mother. It is possible to be the mother but not a mother. She was a grandmother to our grandkids and what a grandmother she was. During the storms in our lives, during all her trails and tribulations she was the calm. She was steady and always positive. She had more faith in me than I had in myself. Maybe she knew with her support, which was unconditional I could never fail. There are times since her passing I feel I let her down. A different Dr. or test, something must have been able to help her, I just didn’t find it.
One day while Cookie was home with her caregiver I was speaking with a home care agency. After telling the guy my story he asked if I ever talked to a lawyer. Remember Cookie died from radiation poisoning, a side effect of cancer treatments. This gentleman was truly trying to help. Was Cookie over radiated, or did the radiation give us ten years of normal life followed by seven years in and out of hospitals and last three years of home confinement. I’m not nearly smart enough to know the answer to that question. I am thankful for every moment we had.
Since her passing I’ve thought much about her last few years. Would I take the life we had for most of those years back, absolutely. She was unable to care completely for herself, her short term memory was gone but she was still Cookie, kind, gentle and loving. Would I take the months she labored in Mother Theresa unable to sit up, feed or care for herself? It would be easy at this time to say YES, but I fear that might not be truthful. During those months when we thought her brain was dying I asked God to take her. One day I will be called to answer for that. I can only hope like she always did in this life she will stand beside me at the throne and intercede on my behalf.
Babydoll, I fear it’s only starting.
I started writing this because I needed to.
