The Final Post

This final posting to the journal and blog is being made by Mike’s wife and daughters. Mike lost his battle with cancer at 4:45 AM on Tuesday April 19. He has told his story “like it is” so I will tell of his final days “like they were” from the journal that I started keeping on March 14 when Dr. Hahn told us that chemo would most likely do more harm than good.
His condition began to worsen on April 12. His weight loss is not visible to me, but is to others. He is using the oxygen more often than not. I began giving him the prescription for anxiety on April 14 and after a few doses it seems to be helping, allowing him to sleep for longer periods of time. He is becoming more disoriented, is having trouble holding things, and cannot type to make journal entries.
On April 15, Mike had a nice visit with his niece, Julie. She is a nurse, so when Joyce came they talked nurse to nurse. I brought Mike a frozen coke (one of his favorite things) and a fish sandwich from Wendy’s. He ate half the sandwich, a few fries and most of the coke. Joyce told us the FlexiTouch is being ordered today. He slept most of the day. His agitation increased in the night into early morning, as seemed to be typical as nights were rough for him throughout this battle.
On Saturday he seemed more coherent, but thinks he can walk without any help. He still dozes most of the time. His sister Renee was here. While I was out running errands she said he was awake most of the time. Before I left I asked him if he wanted to buy me an Easter lily, and he said he did. When I came back, I said “Mike, look at the Easter lily you bought me.” He replied “Oh, Wow!” When we sat down at the table for dinner, (we rarely ate at the table) he paused for prayer (another thing he rarely did) and I asked if he wanted to say it. He said the most beautiful prayer I have heard, in a strong, clear steady voice – part of it was “Lord, I know you are leading me and I am following.” Later he told me he would miss me and how much he loves me. And we cried. It was a very rough night. Mike was in a lot of pain when he tried to urinate. I suspected he had a clot that wouldn’t pass, but he didn’t want me to call Hospice. He calmed down around 3:00 AM.

By 7:00 he was less disoriented, but still in a lot of pain so he agreed that it was time to call Hospice. The nurse on call arrived at 10:45. She was unable to insert a catheter because of the swelling, so she called the ER and had an ambulance come for him. I rode with him and called Jocelyn to let her know. After several tries and excruciating pain for Mike (more than I could bear; I had to leave the room and broke down sobbing as soon as Jocelyn arrived) they completed the task and irrigated the bladder. We called Jenn to let her know what was going on. He was then released to go home. I asked about irrigating again, but was told the hospice nurse would show me how. Not knowing any better, I said ok, and the ambulance took him home. Once home and in bed for a little while, he wanted to walk. He noticed blood dripping as he walked so we got him back in bed and I saw that he was bleeding from around the catheter. I immediately called Hospice again and the nurse came back out. She tried to irrigate again, but could not, so she removed the catheter. She left to go to the hospital to get a larger one. She brought back the same size (largest they had), but was unable to insert it. This led to another call to the ambulance and back to the ER. The nurse went this time as well to do a continuous irrigation. In the ER, more torture for Mike as they made several attempts to put in the catheter. Finally, the got one with a firm tip and it went right in. The irrigation was begun and clots began to move-painful for Mike but better than before. The ER doctor suggested Mike be admitted to be monitored. We were OK with that. By this time it was midnight. Around 2:00 we were doing the admittance questionnaire and Mike was answering all of the questions about family medical history with clarity.
On Monday morning when Jocelyn and I got to the hospital Mike was waiting for breakfast. He ate a little of the omelet and drank the coffee, plus a little more. The irrigation was still at full flow and he was passing small clots. We had a pretty good day-Mike was more comfortable than he had been in a while and talked to his visitors, cut up with the nurses, etc. In the afternoon, I noticed that he was wheezing a little when he was up sitting in the chair. I asked the nurse to check it, but before he could they came to take him for an x-ray since he hadn’t had a BM since Saturday. He had some trouble walking to the transport bed, but when I put my arms around him to help, he danced me a little. When he came back from the x-ray we asked the nurse what it showed. He replied that the doctor would have to be the one to tell us, but that the doctor hadn’t made any changes to his care or medicine which was a good sign. I asked about the wheezing; it had subsided and the nurse said he had checked his lungs and they sounded good. We had a nice dinner with Mike-he ate several bites of chicken pot pie, chocolate brownie and ice cream and drank lemonade. As evening went into night, Mike started getting more agitated and wanted to get out of bed. As I tried to calm him, I kissed him and he reached up with both hands to hold my face and kissed me again. I did the relaxation therapy we used to do in bed –“relax your toes, relax your feet, all the way to relax your face.” This seemed to calm him. Jocelyn and I left to go home at 9:30. We knew we would need a good night’s rest before bringing him home the next day. When called to the hospital early Tuesday morning, the nurse told us that during the night his breathing worsened.

He did go home on Tuesday, just not to our home in Pendleton. When I saw him that last time, my heart broke-I felt the physical pain of it. I have lost the love of my life, my soul mate. I will miss him for the remainder of my life, but I know that he is with me, and I will see him again on the other side.


This is Jennifer, the oldest daughter, and here is my contribution to the final posting:
I will never forget the day I found out that dad had cancer. I couldn’t believe it and didn’t understand how something like this could happen to my family. Throughout this entire process I have had a hard time accepting/processing this. I have always been a very emotional person (which is both a blessing and a curse). For the first time in my life I have had days where I haven’t been able to feel anything. I walk around like a zombie and feel like I am dead on the inside. Other days I break down and can’t seem to regain control of my emotions.
On the outside I tried so hard to be positive. For the past 14 months when friends, colleagues, and others would ask me how he was doing I would try to spin something positive into my version of the story. So many people told me how impressed they were with how strong I was, how I was holding up, etc. If only they had known how I was really feeling. On the inside I was falling apart. A pure and terrifying fear planted itself inside of my heart the day I learned of the diagnosis. I knew I couldn’t let that fear gain control because if it did there would be a darkness to follow that would grab hold of me and would never let go.

As the months progressed so did the emotional roller coaster. There were moments of optimism (chemotherapy to ward off the cancer in the lymph nodes, a surgery to remove the bladder, etc.) but each was quickly followed by “bad news” (lymphedema, neuropathy, failed attempt at a surgery, etc.) and crushing despair. Every single night I prayed to God to give my dad a break. “Just give the guy a break, he’s a good person” I would plead. Several people have told me that there is a reason my prayers weren’t answered others have told me that “everything happens for a reason” and still others have stated that God had a plan for my dad. I understand those words should soothe me and give me some level of comfort but they don’t. Quite frankly I had a plan for my dad too and that plan didn’t include losing him when there are so many more years of life ahead of my mom, sister and I that we need him to be a part of. Maybe one of these days I will come to terms with all of this and then I will believe there was a deeper meaning and reason behind it. We’ll just have to wait and see about that…
I started seeing a therapist a few months after the initial diagnosis. I say that publicly here because I am by no means ashamed or embarrassed. I have learned enough about myself to know what I can cope with by myself and what I cannot. This situation was something that I would not have been able to process in a healthy way by myself. I sought refuge in meditation and running. I learned how to run and cry at the same time which is not an easy thing to do, let me tell you.
There is no doubt in my mind that my dad knew how much I loved him. He and I became much closer during his sickness. I think in part that was due to him opening up and being better able to connect with me emotionally. The other part was my realization (in the fear of losing him) of how much I deeply loved him. The day following his birthday party he showed me how swollen his belly/trunk was due to the lymphedema. He broke down. We sat on the couch and I held him for close to an hour and we just cried together. I told him not to be sorry (because he felt so bad for putting us through all of this) and I told him how much I loved him and that I always would. It took me close to a week to emotionally recover from that incident but in a way I am so very grateful that we had that moment together. In a previous blog he mentioned that he felt my trips home were a burden to me. I never felt that, not once. In reality I hated that I wasn’t able to be there all the time. It broke my heart to leave him and drive back up to Chicago after my visits. To compensate, I tried to make it home as often as I possibly could. I feel that I did the best I could with that.
I could continue to write for hours but I’ll wrap it up here. I lost a crucial person in my life and words cannot express how important my dad was to me. This is a loss that I will feel for the rest of my life. I will miss him every single day and I know that the pain and sadness will never really go away. There will always be a piece of my heart missing but I know in time it will become bearable. I will learn to take comfort in the fact that he is looking down at us all and that he is watching over us.
To dad … I couldn’t have asked for a better father and I am eternally grateful for all of the love you provided, the lessons you taught me, and the life you gave me. Now that you are gone, I will try to make sure you are still able to influence the world by incorporating your eternal optimism, your love of life, and the compassion and empathy you showed to every single person you encountered into my daily life. I will try my best to let those positive elements of your character shine through me in the life I live from this day forward. I will always love you.

This is Jocelyn, the youngest daughter, and here is my contribution to the final posting:
After reading this blog, you probably know all about my Dad’s cancer, but here are some things you may not know:
My dad was hilarious – one of the funniest people I know. He always had random jokes to tell and when he told them, he would always start laughing before everyone else. When he laughed his face would get all scrunched up, and hardly any sound would come out – that laugh made me laugh, even when the jokes weren’t that funny, and sometimes they weren’t.
My dad was selfless – a fact that just occurred to me the other day. In 30 years of knowing him, living with him, being raised by him, I don’t think my dad ever once put himself first. Everything he did, he did for me, my sister, my mother, his mother, his siblings, his friends. I wonder now if there was anything he really wanted for himself that he had to sacrifice for us. I wish I would have asked him.
My dad was an eternal optimist, as my sister already mentioned. Even when the animal had invaded nearly every part of his body and every part of our lives, he was still happy. He still wanted to talk to people, have visitors, smile, laugh. When he was tired and hurting, he was still happy. He told me that we are just happy people, and he was right.
My dad was smart – not just average smart, really smart. Every problem I needed to solve, every challenge I faced, I could take to him. And most of the time, he would find an answer. I was secure in knowing that he would help me no matter what, I was secure in knowing that his wisdom was my safety net. I don’t know who I will go to now. I guess I will spend a lot more time on Google, and I will think of my dad when I do.
My dad was loving. He was one of the best friends I will ever have. He was my greatest confidant. He offered me a sympathetic ear, a shoulder to cry on, and advice about my career, about my marriage, about my home, about my everything. He was the kind of friend that everyone should have – funny when you need to laugh, quiet when you need to vent, patient when you need a teacher, and strong when you need to cry.
My dad is irreplaceable. Unfortunately, as you likely know all to well, my dad’s cancer was ordinary, an illness that afflicts many patients and alters many lives. But, my dad was extraordinary. He was so much bigger and brighter than his illness could ever have been. He changed lives with his kindness, his love for family and friends, the way that he embraced life. You may think from reading this blog that he was dying for these many months. He wasn’t. He was living. From the time he was diagnosed until his final moments, he was living his life, loving his family, and filling this world with a joyful spirit. No one will ever be wonderful in the unique way that he was wonderful.

I love you, Dad. I have loved you my whole life, I love you still, and I always will.

April Realities

April two and the wind blows cold.  The yuk factor of the animal has dominated much of my record of late or seems to have.  This I think causes me to leave out all of the joy I have and all of the blessings heaped upon me because the animal is within.  This is a terrible injustice.  While certainly uncomfortable I continue to be productive and must tell of the good.  On the other hand many folks want every detail of the misery associated with the animal and it would be an injustice I think to not put it in this record. 

I broke out the walkie talkies, cleaned them up, put a 12V charge on them without research (very dumb considering I have a lap top on my lap with the app to find out.  I don’t know what it is, but we are like a couple of 4h graders when it comes to these walkie talkies.  Right now she is folding sheets and I am in the family room and we are reporting back and forth to each other on channel 18.  We bought them  for when I worked in a confined space like the attic, crawl space or up on the roof so they are rarely used and more of a feel good tool anyway.  The wind blows a steady 20 mph now and will rise as the day progresses and we get a rare warm front from the South.  I had a nice visit with John.  Inger came early with devotions, prayer and upper workout.  I am blessed beyond measure. 

I slept April third.  The cumulative impact of pain killers I think, but that is ok.  Both Daughters and Son together in the afternoon for a short period of time made this a good day for me.  I wanted to play a game or something but in reality it is hard to be fun when you pass out sitting up in the middle of a sentence.  Of course I did not need the oxies, a good thing. 

Yuk factor:

Fluid content in my tissue seems to be increasing.  My profile is one of a monster, with huge legs, a package by Samsonite, my abdomen swollen and stretched.  At last weigh in the fluid retention had taken me to 220, a gain of about twenty pounds.  I am beginning to experience restricted range of motion in my legs and seepage is increasing.   I cannot put on socks or shoes and can barely do pants.  The increasing dependency on others for the most basic and personal of functions is a real ball buster for me. 

Tuesday morning the sales rep for a lymphedema pump company showed up to demonstrate her device.  After about 30 minutes we quit and the effect was measurable and very positive.  I love it, another weapon to battle with.  It will not kill the animal but perhaps it will piss it off and give me back some mobility. As the week wore on the weak wore on.  Thursday Rex came to visit for the day.  Fortunately for me we have wireless in the house and office space available, enabling my working family and friends to extend there time here.  In this modern age my Daughters and Brother can roll in for hours or days, laptops on the shoulder and smart phones ready and at hand, virtually connected to their endless work no matter where they are.   Friday with both Sisters and Jack was none the less entertaining and restful, even though it does not sound it.  Friday night came and another treat.  Jocelyn and Jared appeared at dinner time with a baseball theme dinner including but not limited to;

1. Giant bag of fresh baseball unshelled peanuts
2. Sangria (again for the squirmy handshakes)
3. Lots of icy cold beer
4. Nachos
5. Hot dogs
6. Coney dogs (beans, cheese, onions available options)

We even found a baseball game, although the Cubs were apparently blocked out.  So we watched reruns instead and a little baseball.  What fun, and a theme dinner based on TV, genius I think. 

Yuk factor;  I have determined that I cannot say it is better on the ’other side’ .  My faith says it is, but it seems to me it would be difficult to have it better, given the life of blessings bestowed upon me.  I do know I will certainly miss this life on ‘this side’ 

The Last Of March

We went out for dinner last night and brought home a couple of meals in ‘to go’ boxes.  I wonder how I ever got around a full serving of anything. Tuesday started on the rough side.  I worked on some follow up letters and tried running down a few.  At best I managed about a half day of work.  In my defense the incoming was intense.  Joyce my Nurse came in for her first weekly visit.  I am bumping her back to two times a week until we get a complete handle on my symptoms.  We also entertained Killer and Sharon and they us, friends and always fun.  On top of that a chaplain stopped by.  She ended up staying about two hours as she patiently worked our story out.  She found inspiring many things we take for granted.  I understand in many cases the animal drives a couple apart.  It has driven us together.  Vanessa took on the battle just as if she were me.  I told the chaplain about Inger and the daily devotions, that Vanessa and I agreed to smile whenever we looked at each other, about our Families and our Family. She read my book ‘The Gooses of Madison County’ and we never stopped entertaining her and answering her questions.  After she left we laughed at the role reversal as it seemed we counseled her more than she us.  In this home so full of blessings it can become overwhelming. 

Tuesday night I experienced intense ball bag swelling.  It happened suddenly, painfully swelling to twice the size.  OMG, what now?  I set up arranging pillows for the maximum elevation, doubled up on the pain meds and began therapy around 8 P.  By 3 A my condition had subsided significantly.  I did not accomplish much Wednesday.  Somewhat weakened by Tuesday and the pain killers I think.  Now 5 A Thursday and the day looks promising as I write this.  While uncomfortable I manned the office today and stayed at my work station for a good part of it. 

Friday and it is April Fools Day.  I called Bruce and told him it was the last day of the month.  He believed me.  I now find that even the largest of sweat shirts I have are tight.  My profile is so distorted as to make others uncomfortable looking at it.  I found one hoody to wear while we have company tonight.  And with the night we enjoyed the company of  Mike B with Chris and the Hays family and a culinary delight we all got to share, Mike B’s  ribs.  Wow, it might be a full day before I get over it, they were really good.