Welcome to Lorie's Page
Welcome to my fundraising page! Kat, Adam, Mike, Jeff, and I have committed to raise funds to benefit cutting-edge brain cancer research through ABC2 by rappelling down the side of a building! On October 27, I will rappel down 18 stories of the Hyatt Regency Crystal City.
On August 9, 2018, we lost my amazing father, James Warren, to brain cancer (glioblastoma multiforme). Please see my blog posts, My Story, and The Rest of the Story, for my account of our journey through this past year (you may need to scroll down to the bottom to read them in order).
My family was surrounded by world class doctors, loving friends and family, and overwhelming support from the community. I feel the need to give back.
I am forever grateful and hope this fundraiser will be only one of the many ways I start paying it forward. There are almost 700,000 people living with brain tumors and about 80,000 more will receive a primary brain tumor diagnosis this year. Despite the amount of brain tumors, and their devastating prognosis, there have only been four (4) FDA approved drugs to treat brain tumors in the past 30 years. More research is desperately needed. See my blog post, Statistics, for more information.
Your donation can and will make a difference! Thank you in advance for your support!
My Personal Web Log
My father, James Warren, was the most vibrant, vivacious, intelligent, hard working, and loving man I have ever known. He was so full of life and always had the most beautiful smile on his face. He exercised regularly, beginning each day with 100 situps and 100 pushups. He was an extremely accomplished slalom water skier, outskiing men 30+ years his junior. He was rarely ever sick, at most a cold here and there. His answer to feeling under the weather? Run five miles and take a hot shower! I honestly thought he would live forever.
In mid-August 2017, my family started to notice little things changing with my father. He was struggling to use his right hand and at times could not think of words. He was sleeping a lot and generally seemed off. He went to his primary doctor several times and was told he had carpal tunnel. However, the symptoms kept progressing.
We thought maybe he had a stroke. The doctor scheduled an MRI for weeks away. He came up to DC to visit my sister, Kat, and me, and I knew instantly something was very wrong. We were helping Kat move into a new apartment and were hanging pictures for her. Daddy couldn't hold a drill or do math calculations in his head, tasks he could normally do in his sleep. I was terrified and begged him to go to the emergency room when he returned to Tennessee.
He went that week and we learned he had a brain tumor. Nothing can prepare you to hear the words, "daddy has a brain tumor." I was at a class in Dupont Circle and sat there in front of the metro and cried for what seemed to be an eternity. I rode the metro home in a daze and cried desperately for hours. To this day, I feel nauseous every time I pass the Dupont Circle metro station.
But the next day, I picked myself up and went on a mission to find my dad the best doctor I could find. I called everyone at Johns Hopkins I thought could help. My father's cousins, Susie and Andrea, enlisted friends from their days at Johns Hopkins. In a matter of days, we had daddy an appointment in Baltimore with Dr. Weingart.
Mom put dad on a plane and we spent the next few days anxiously awaiting his appointment. Every day I watched him quickly decline. He struggled greatly to walk, he lost almost all use of his right arm, he closed his eyes when he talked, and struggled to find words and names. I knew we were in a desperate situation when he told me he couldn't remember how to say his prayers and wasn't sure he would live much longer.
We went to the appointment with Dr. Weingart and he did an MRI there in the office. He told us he believed daddy had the most aggressive form of brain cancer, glioblastoma multiforme, but he couldn't be sure until they performed surgery and did a biopsy (the biopsy confirmed our greatest fears). Two days later, on September 28, 2017, dad had brain surgery. He spent a couple days in intensive care, then a couple more days in the hospital, then was transferred to a rehabilitation center in Virginia. He spent a couple weeks there and made some good progress, but still struggled to walk, use his right arm, and his speech was clearly affected.
The only silver lining in all of this was he was still mostly himself. I've read many stories of personality changes after brain tumors, but dad was still strong and intent on getting better. Even up until the last few days of his life, he would attempt to make a joke and smile at me.
He was finally released from rehab and made the journey back to Tennessee, to the childhood home he loved and his two special puppies, Maverick and Shadow. On November 3, he was able to walk me down the aisle to marry the love of my life. He was happy and strong that day, probably the best he was in his year long battle.
The next week he went back to Baltimore to do an experimental radiation treatment with Dr. Kleinberg at Johns Hopkins. The normal course of treatment for this type of brain tumor is six weeks of radiation in conjunction with the chemotherapy drug known as Temodar. Dr. Kleinberg worked with other forms of cancer doing a targeted, intense, but shorter course of radiation. These other trials produced great results in breast and colon cancer, and he hypothesizes that it will be better for brain cancer as well. Dad was his first patient in this brain cancer clinical trial. Theoretically there should be less damage to surrounding tissue and less side effects. Dad chose to do this one week session instead of the six weeks of radiation. This clinical trial is only one of a handful in many, many years (see my blog, Statistics).
The radiation treatment seemed to go as well as that sort of thing can go. He was extremely tired at the end of the day, but still managed to go out on the town with my Aunt Martha and my sister. After radiation, he returned back to Tennessee and began the standard course of chemotherapy treatment, Temodar. He took five days of the Temodar and then had 23 days of rest, for six consecutive months. We were told repeatedly by several doctors the Temodar would not have the same detrimental side effects of other cancer treatments. He would be tired, but that would likely be the only side effect.
How terribly wrong that turned out to be. Every time he took the Temodar, he would experience more and more debilitating effects. He had excruciating leg cramps, edema in his brain and legs, bone crushing exhaustion, bruises on his body, muscle wasting. It was horrible watching him suffer and deteriorate and the emotional and physical toll it was taking on my mother, who was the primary caregiver.
At the end of February, my sister, husband, Aunt Ellen, and I were able to take dad to Cozumel, Mexico. In the hospital after his brain surgery, dad would tell me over and over he wanted to go to the beach and see crystal blue waters and sit on a gorgeous white sand beach, so that's what we did. One day while we were there, daddy told me he did not think he could, or wanted, to continue treatment much longer. At that point in his journey, I believe he had just finished his third round of chemo. The doctors at Johns Hopkins recommended a six month course, while his doctor in Tennessee recommended a one year course. I told him to try three more treatments and I would support him ending the treatments after that. All his MRIs showed the Temodar was working as it should - no progression in the tumor. At that time, I tried to reassure him that everyone goes through this difficult patch with chemo and the hope was to come out on the other end cancer free. I knew the statistics were not in our favor, but this was Jim Warren, our Captain, our Superman. If anyone could beat the odds, he could.
I also told him if he wanted to stop then, I would support that too. For a man who went 100 miles per hour from sun up to sun down, his quality of life was in the negatives. But he chose to continue.
Dad returned home and my sister, husband, and I returned to DC. Over the next few months, I returned to Tennessee as often as I could to spend time with my parents. I am blessed in this life to have a wonderfully supportive husband who held down the home front during these many trips, an amazing group of coworkers and a job that allowed me to work from Tennessee, and the means to travel so often. Every trip home, I could see I was losing my father. And I could see the despair and desperation in my brave mother's eyes. I will forever be in awe of the strength she showed taking care of my father, my siblings, and me. She held it together when I would break down, sobbing from the depths of my soul. She held it together so she could hold my dad together. She is proof that angels walk among us.
by Lorie Warren Cashman on Wed, Sep 05, 2018 @ 8:59 PM
The Rest of the Story
Due to dad's decreased immune system, he eventually contracted shingles. At first, he was misdiagnosed as having a bullae virus. He went two weeks with no real treatment. His symptoms progressed significantly to the point he would be screaming in pain and begging anyone and everyone to take him to the emergency room. Finally, his oncologist correctly diagnosed him with shingles, but they had progressed so terribly, it took a great toll on my dad. In early June, he fell and wound up in the hospital. He was extremely weak and dehydrated and spent over a week in the hospital. At that time, his oncologist came to visit and told us he did not want to continue treatment until dad was over the shingles and stronger. We told him dad did not really want to continue anyway and he told us to expect dad to live three to six more months.
We decided to take daddy to Morning View Rehabilitation center and see if he could get strong enough to come back home. Due to the shingles, he was in quarantine and could not leave his room. All the doctors and nurses said he had the worst case of shingles they had ever seen. They were along his neck and shoulder and caused extreme nerve pain. He would scream and cry in agony. No amount of pain medication seemed to ease his suffering. We finally made the decision to elect hospice and take him home.
It took weeks to find a pain management regimen that helped him, but my mother and hospice worked tirelessly until they found the right combination. Dad was able to visit with some of his friends and family over the next couple of weeks. My sister, husband, and I came home for one last visit. I know no one really knew the last visit would really be the last, but somehow I did. I knew the last time I kissed him and told him I loved him would be the last time I would see him in person. I spoke to dad on the phone one last time after that. He asked me how I was doing and if there was anything he could do for me. That was my dad through and through - only concerned for the people he loved.
On August 8th, my brother called me at 10:00 in the morning and told me I needed to come home. It was time. My sister and I left that afternoon and pulled in the driveway around 10:00 p.m. My mother met us on the porch and told us what to expect and how hard it would be. Dad was in a coma and had what they call "the death rattle." Seeing dad that way was devastating. But I choose not to remember him that way. My sister sat with him through the night so my mom and I could rest. The next day, my mother, sister, brother and I went to the funeral home to make arrangements, as suggested by hospice. We had lunch. We thought we had a little more time.
We came home and I sat with dad. I told mom to go rest in bed and ease her back pain for a little while. Kat started bathing the dogs because dad had said earlier in the week "they stunk." I had a moment alone with dad and I told him everything I wanted to tell him. Told him I loved him and what an amazing father he was. Told him I would miss him, but it would be ok if he wanted to go. I still thought I had a little more time.
I prayed with and for him, something I have not been good about over the years, but something I know daddy would have wanted. I asked god to ease his suffering and to bring him home. I still thought I had a little more time.
As soon as I said Amen, I noticed dad's dog, Shadow, in the floor, and he was crying. I picked him up and asked him what was wrong. He continued to cry. So I showed dad to him and told Dad Shadow was with us. And then dad took two breaths and was gone. Just like that.
My father passed away on August 9, 2018, less than one year after he was diagnosed with a brain tumor. I spent many hours over this past year looking for alternative treatments, different chemotherapy, anything that might provide us with another option for treatment. But there isn't anything. There's only been four FDA approved treatments for brain cancer in over 30 years. We are in desperate need of research to remedy this.
I think Dad took my breath with him when he went. I know they say it will get easier with time, but there's a deep hole in my heart and it's still hard to breathe every day. I want to honor my father and pay it forward in any way I can. When I pray, I feel certain this is what I am meant to do and my path to healing.
I know my story is like many others who've traveled this road with their loved ones. The research ABC2 provides could help others in the future. Please consider a donation and help us in this worthy cause.
by Lorie Warren Cashman on Wed, Sep 05, 2018 @ 8:32 PM
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