Arnie's Rebounding World: The Final Chapter
This is a special edition of "Arnie's Rebounding World." Many Beacon readers know that Arnie Goodman, who authored this column for more than three years, passed away last July. This edition of the column is written by Arnie's wife Merle, who has generously offered to share with the Beacon community the "Final Chapter" of Arnie's story.
I told Arnie that, when he died, I would write his final column.
It has taken me longer than I expected, however, as it was not as easy as I thought it would be.
I wanted to write the final chapter through his eyes and words because, after all, it is his story. But I ran into two roadblocks:
Number one, Arnie wasn’t a big talker about his illness from a feelings point of view. When he wrote his columns, it came very easy for him. He usually knocked out a column in an hour, maybe a little more. It was apparent to me that writing about his feelings and thoughts was a lot easier than talking about them.
Once he finished a draft, Arnie would immediately email it to me to read and proof. In reality, I believe that this was the way he shared a majority of his heart-felt thoughts, even to me. I always made a few grammatical corrections and marveled at and praised his writing.
So, although I always wanted to write his final chapter – especially as seen through his eyes – it became glaringly apparent that he hadn’t shared his final thoughts with me.
Which leads me to roadblock number two. Because I never knew Arnie’s inner thoughts about dying, this final chapter became my and my family’s final chapter, and maybe not so much Arnie’s.
But, at this point, I am ready and willing to share our experiences.
It was the week of July 21 last year, and Arnie was going into Moffitt for routine blood tests. His counts were low, so they gave him Neupogen (filgrastim) shots to bolster his white blood counts. Neupogen, though, didn’t seem to be doing the trick that week. The low counts meant Arnie was very susceptible to infection.
That Monday, while I was out with my daughter Dori, Arnie sent me a text telling me about his counts and said “This isn’t good.” Dori and I had heard this hundreds of times, so we kept doing our own thing. We were getting ready for a trip to New York, which was to be our last hurrah before she left for college. I was also getting ready to visit my dad for his 85th birthday.
Neither trip happened.
On the morning of July 24, Arnie took our chocolate Labrador retriever for a walk, as he always did. They came home early, as Arnie shortened the walk, not feeling up to par. I suggested I go to the clinic with him that day as he was scheduled for his Neupogen shot.
Arnie had no fever; he just felt punky. He got fluids and Neupogen, and we were told to come back on Friday for lab work yet again. After six hours in the clinic, we came home and, within an hour and a half, I was taking his temperature, as he was complaining about being cold in the middle of July in Florida.
By 9:00 that evening, I was driving Arnie with his overnight bag to Moffitt to check him into the hospital. I packed his bags with enough clothes for two nights. We had a routine for these after-hours hospital check-ins. This was a routine that we had done many, many times, I am so sorry to say. I dropped him off at the entrance to Moffitt hospital and he went ahead of me to check in. I always parked the car and brought his overnight bag in with me.
That night, as I was dropping Arnie off, he turned and looked at me and said, “Well, here we go again.” I nodded in agreement. Arnie said, “Nobody knows what we go through.” I nodded again. Nobody did, and, at that moment, we both realized we were a team, with a routine, and only we could relate to this.
By Friday, Arnie’s fever counts were the same, all not good. He had the flu, felt terrible, and was not getting better.
By Friday night and Saturday morning, I noticed he was having trouble breathing and was short of breath after doing just simple things. He was sleeping 80 percent of the day. I told anyone who would listen to me that I was concerned about his condition. They said Arnie had the flu, which had turned into pneumonia.
His counts were low, his kidneys were failing, and he felt terrible. There was talk about putting him on a respirator. I called my son, who lives in Washington DC, to tell him to come home, and spoke to Arnie’s parents about coming to Tampa.
Arnie initially wanted to be on a respirator. He thought maybe it would give his body time to heal as his counts came up. I wasn’t that optimistic, but, for a short while, I was willing to go with his wishes.
By late Sunday, things continued to spiral downward, and, by Monday, the doctor said we had to make a choice: respirator, or palliative care.
Arnie made the decision: oxygen and drugs to keep him sedated. At that point, all indications were that Arnie would not live more than a day or so.
Our family sat by his side all day. Arnie had felt bad enough Thursday through Monday that he requested no visitors. Friends were disappointed but understood. On that Monday morning, when things were getting worse, Arnie finally said people could come for short visits. Only a few people came, because of timing, not because they didn’t want to. Arnie had an oxygen mask on and was in and out of being “loopy.”
By 11:00 that night I was exhausted and I took Dori home. Sam, our son, stayed with him through the night and was with Arnie when he died. At 2:00 in the morning, Sam called me, and I gave the orders to turn Arnie’s oxygen off. I, too, was there for Arnie’s death. I wish I could say it was peaceful and beautiful. It was neither. Arnie never wanted to go.
Arnie spoke to Sam a little about things Sam needed to do when he died. For me, I brought some mail up for Arnie to look at. His response was, “Put it on my desk, I’ll take care of it when I get home.”
I will never understand if Arnie knew he was going to die. My guess is he knew, but just couldn’t talk about it with my daughter or me.
Arnie died 5:12 a.m. on July 29. My family’s world changed. Two weeks later, I took Dori off to college. Six months later, Arnie’s clothes are still in our closet. I was able to pack up his study. Baby steps, I still keep telling myself.
During the course of these six months, my family and I have gone from good and bad days to good and bad moments. Arnie’s presence is strong in our hearts and lives. We talk about him out loud and publicly, as well as personally among our friends and family.
We all knew Arnie was going to die from multiple myeloma. I had a secret wish that he would go the way he did — quickly and from the flu. For this, I am grateful. Knowing Arnie the way I did, I never wanted him to hear the words “Go home, tidy up your affairs,” because Arnie would have never been able to do this.
The last chapter of anyone’s life is so hard, but please know Arnie left this world very loved.
"Arnie's Rebounding World" appeared monthly at The Myeloma Beacon from February 2011 until July 2014. You can view all editions of the column here.
Thank you so much, Merle, for letting us know in very descriptive, honest detail, about Arnie's last days. He was a brave fighter who left no stone unturned in looking for treatment options. With a loving family, he had much to live for! Through his excellent, practical writing, he helped countless individuals with their myeloma struggles. His advice for me professionally and personally was invaluable, and we enjoyed conversing by phone many times. I suspect he loved you and your children so much that he kept his greatest fears from you, to protect you to the very end.
Take all the time you need to grieve his passing with your family and friends. His essence remains in the memory of those many who loved him. You, Sam and Dori can be proud of his legacy. May you be blessed, and may you all find a wonderful love in your self, from Arnie's spirit now resting in peace. Jan
God bless you, Merle, and your fine husband.
marvin
This was wonderful; brought tears to my eyes. It is the way I want to go, too.
Merle - Arnie's incredibly impactful writing lives on through you ...
A beautiful man.
We miss him, as do you.
Thank you, Merle. I'm sure this column was very difficult for you to write. But by writing it you have helped those of us in the Myeloma Beacon community. Arnie was a big part of this community. We miss him greatly.
We are thinking of you and Sam and Dori. As much as we in the Myeloma Beacon community miss Arnie, we know you all miss him much, much more.
Thank you Merle.
I always looked forward to Arnie's column. What a special gift the two of you have given to us - to plan and do this column about his final days. God bless you and your family in your recovery.
Julia Munson
Amen
Thank you, Merle for, writing such a beautiful, difficult story. Definitely brought tears to my eyes.
Merle, Sam and Dori,
I was ill and did not get to attend Arnie's funeral last summer, but not a week goes by that I do not fondly and gratefully think of Arnie. His kindness, empathy, and courage enabled him to become my coach, friend, and support system after my diagnosis with MM in 2012.
Even as his own health was fading last summer, he spent time with me, over the phone, discussing my relapse. Arnie was a truly remarkable person who found time for others even when his own situation grew more and more dire.
I am positive that only the finest kind of person would discuss at length my problems when he could have easily been excused from such activities. I vividly recall a long conversation with Arnie last June when he was in the hospital awaiting news from Boston about a new experimental drug. I was in a Starbucks parking lot, and he was in-patient at that moment. So, clearly my problems could have been delayed, but Arnie didn't wait. He gave me his full attention as he always did.
Reading Merle's wonderful column today, I am reminded how truly remarkable Arnie was and IS for me. We are told that we live on in the good deeds we perform while alive, and I have no doubt that, by that standard, Arnie continues to live on.
My hope for all MM patients is that they find someone like Arnie to assist and support them through the many ordeals of their disease.
I miss Arnie, and I am confident that there are many others who feel the same way. It is rare and inspiring to have a friend like Arnie. I will never forget his exceptional kindness, and I will think of him often.
Rodger Popkin
I only knew Arnie through these columns he wrote. But he affected me deeply and I cried a lot when I read he had passed away. He was a brave person and fought so hard. I still miss his columns. It's funny how someone can touch our lives and we didn't even meet.
Thank you for sharing what you did. It is so personal and very moving. The healing is hard and, really, I don't think you ever get over certain things. You cope and go on, but it's always there.
Thank you for sharing this with us. Peace be with Dr. Goodman, you, and your family.
Thank you for sharing such a deeply painful and personal moment with us. I read each of your husband's columns in the Beacon and found comfort and courage from each of them. I can only imagine your personal loss, but please know that Arnie had many nameless and faceless friends out there who care and share in your loss. We send our prayers and hope for a happy life for you and your children, as we know that Arnie would have wanted. He won't be forgotten.
My husband and I only knew Arnie through his columns, but they were our favorites! Partly because he and Arnie had fought MM for the same amount of years, and their paths were almost the same in what worked and didn't work on their MM. They both had such a wonderful fighting spirit too.
My husband passed away from his MM complications a few months before Arnie. I shed tears for both of them, but I am also grateful for how much their strength and courage touched my heart.
Thank you for your beautiful words, and I wish you and your family peace and blessings and joy in the small moments of life.
Merle, Thank you so much for sharing your most personal last moments with Arnie and your family. My heartfelt condolences and prayers go out to you.
I don't post very often, but I check in to the Beacon quite often, and I want you and all of the other contributors to know how much it means to me, the caregiver. My husband was able to only tolerate a few months of treatment, and for the last 4 months, he's chosen the path of no treatment. It scares me not knowing what's going to happen in the future. He feels pretty darned good, now that he's not on chemo, dex, etc, but the 'elephant' is in the room, and it's hard to live normally (if that's even possible) without wondering when the other shoe is going to drop. I don't even know of any other MM people who have decided not to proceed with treatment, so I feel a little alone out there!
Thank you again for sharing, and God bless you!
Thank you for sharing Merle. What a brave contribution to this platform. It takes a lot of strength to write the end of his strong fight as well as the last of his/your contribution to the Myeloma Beacon. Hope you and your son and daughter will find a lot of beautiful moments filled with precious memories and new happy events. To the brave hearts on this world, chapeau.
Merle, thank you so much for writing and sharing Arnie's final chapter here in the Beacon. My heart breaks for you, Sam, Dori, and also Arnie himself, since you wrote here he didn't wan't to go yet.
I don't have MM, nor am I a primary caregiver who sees and experiences the ins and outs of what it's like on a daily basis to be on the journey with a loved one who has this insidious disease. Someone I love has MM. As difficult as it is, I've always wanted to be the primary caregiver. You have truly opened my eyes with what you wrote about not knowing what Arnie's deepest feelings were about his death. I often assume the caregiver, especially a loving spouse, would be privy to those feelings.
I've read all of your husband's columns and had always looked forward to the wisdom he would impart. He never gave up and took every avenue open to him. I believed him to be invincible. He was such a brilliant man; I believe a great part of him believed he was invincible as well, to a point. He understood the uncertainty of the disease, but that never stopped him. He gave his all to the very end, and I know in my heart how deeply he loved his family.
From what others have written about his personal guidance, direction and friendship, his heart was also open to so many who depended on his expertise. I can't even express how much I personally learned from him. After my close friend was diagnosed, the Beacon became my MM university and your husband was the Dean. His thirst for knowledge was unquenchable. He shared all he learned, fact-wise, on all the various approaches, but he also shared his human side as well. What a beautiful combination.
I have to understand that people with MM don't always wish to share every detail of their undesired journey. Many times, loved ones are fearful to delve too deeply and ask about the "what ifs". We don't want our loved ones to ever succumb. We want to believe there is always a new treatment to try if a relapse occurs. I have to believe our loved ones feel the same. The mantra is "Don't ever give up. Never give up".
Arnie never gave up and he inspired and provided comfort to so many. I can't imagine not having "the conversation(s)" about putting affairs in order, "just in case", and what wishes our loved ones want carried out, "just in case". Even though Arnie said "No one knows what we go through", one never knows what is truly in store. I thank you again for being so frank and honest. I mean absolutely no disrespect by what I've written; you have no idea how you've humanized this experience for me in so many ways.
I still read almost every Beacon column that is published; the exceptions are the ones that contain extremely in-depth medical jargon (i.e., specific gene data) that I don't truly understand. Those particular columns are from studies that do not apply to my friend. I appreciate the columns that contain human perspective and hope, "backed" by relative medical data.
Your amazing husband is sorely missed, and I pray for your entire family. I lost my Dad to a rare cancer and still miss him. Some days my mom and I reminisce and laugh. We shared so many beautiful memories with an exceptional man. Other days, the deep missing hits and I'll cry for awhile. What keeps me going is knowing he is at peace in Heaven. I also know he is my greatest guardian angel whom I still speak to every day.
Your husband has left a truly remarkable legacy; the comments posted after Arnie's passing are a true testament to the exceptional husband, dad, son, friend, doctor and human being he was. I know you have to miss him terribly, but I so admire your strength, commitment, and love. You shared him with so many who needed him. What a fortunate man Arnie was to have you by his side in life.
God bless you and your children today and always. May your hearts be filled with an abundance of wonderful memories. With warm regards and peace.
Thanks for an excellent column. I refer your husband's columns to the newly diagnosed patients I come in contact with. His columns will continue to help patients for years to come.
So beautifully written. Thank you for sharing.
Lyn
Thank you so much for sharing this final chapter. I read Arnie's articles, they were very important at a difficult time when my wife was diagnosed with MM. What you shared here is also important to me as this is likely my future in a few years. Thank you for such an effort, which I know is not easy.
Daryl
Your article was very heartfelt and appreciative. I miss Arnie's columns and he will always be remembered as I continue to read "The Myeloma Beacon."
Thank you for this deeply moving column. I can't imagine how difficult it must have been to write. Your story is on my heart, and your family continues to be in my thoughts and prayers.
I was fortunate enough to see Arnie a week or so before he passed. Even though we only knew each other for a few years, Arnie and I shared a bond that's hard to put into words. He was a great guy with an amazing spirit. I got to know Merle toward the end of Arnie's journey. Her unwavering spirit was my ultimate inspiration. Merle, Pattie and I are still expecting you and the dogs to visit us on Amelia Island sometime soon...
Dear Merle and family,
Thank you for writing the "final chapter". I / we loved reading Arnie's columns -- they really connected with me and my sister Carol, who has been my advocate and support system through my husbands ongoing four-year battle. When I read of Arnie's passing, I immediately called Carol. It affected us both very deeply.
Sending you strength, peace and lifting you up in prayer. Carol lit a candle for Arnie at the University of Notre Dame Grotto.
Susan, Bill & Carol
Thank you for being willing to write Arnie's final column and sharing it with us. More than anything, I dread the thought of my family, and particularly my wife, having to go through this expereince. Peace be with you and your family.
A beautifully written column.
All I want to say is "thank you" for your column sharing private moments I hope will help my family when the time comes. I truly understand where you and Arnie were before the end, and I hope your words and sincerity help me and my girls in the end. My heart goes out to you and your children. My youngest will graduate high school this June and my husband is in late stage - way too young, same as Arnie. I have only followed two columns - his and Pat's. Informative and sensitive.
Merle, Thank you for sharing.
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