I would like to personally thank everyone for all of the kind posts, words and cards that have been sent to me and Jessica’s family. The response has been heartfelt and very much appreciated by all of us.
Our bunnies Blossom and Gracie are preparing for their annual celebration this weekend, so I would like to wish everyone safe travels and happy weekend as you head out to see your loved ones.
~~~ Seth, Blossom and Gracie
Last Friday night was probably the hardest night of my life. At the young age of 33, my best friend, my fiancé, the love of my life, Jessica Beth Rice passed away from complications due to Bronchioloalveolar Carcinoma lung cancer.
Early Tuesday morning on March 25th, Jessica was rushed to our local hospital by ambulance due to extreme head pain, nausea, and dizziness. After several rounds of Morphine and then Dilaudid for pain relief, the doctors were able to keep her stable enough for a cat scan. The cat scan revealed severe swelling of the tumors in her head, most alarming was the one at the back of her head near the cerebellum. The ER doctors immediately consulted with Jessica’s regular team of doctors, and she was then quickly transported to the larger sister hospital facility located a bit further away.
Once there, I met with our regular team of doctors and surgeons to find out what could be done. An MRI was ordered, and the hope was that most of the tumors were just swollen, and possibly treated with a combination of steroids and minor surgery. Unfortunately, the MRI revealed that all 25 tumors had grown “significantly” in just the past two months. The tumor at the back of her head which was the most alarming had grown from 1cm to 3cm, and was causing extreme pressure in her head. This was the realization that she was running out of time. Surgery was not an option due to the size and number of tumors, steroids were no longer effectively controlling the swelling as they had previously, and we were out of options. Doctors gave us 3 weeks…. at best.
On Wednesday, Jessica woke up for a few moments, and I just held her as I told her what was going on. She looked up and just said, “I thought we would have more time”. As I held her, we both cried for awhile until she fell back asleep. For the next several hours, I sat there accompanied by her mother, held her hand, and talked to her as much as possible. I met with the Hospice navigators that afternoon, and arranged for at-home hospice at our house, which was Jessica’s wish.
Jessica’s brother, Cisco arrived at the hospital a few hours later, and she woke up when I told her he was there. She opened up her eyes, and said “Hi boy, it must be pretty bad if you’re here.” They talked for a few minutes, and she told him it was going to be OK, and that he should “take care of mom.” Cisco held her hand for the next few minutes, and talked to her until she again fell asleep. I again sat by her side, holding her hand all night, and monitored her pain level and vital signs. By early morning, we had to increase her pain medication once again to keep her comfortable. The increase in medication made her extremely drowsy and she mostly stayed asleep, but her comfort was the most important thing to me.
Just before the hospice-transport arrived on Thursday afternoon, I met again with our Oncologist who came by to see her again before transport. I told him what I was seeing in how long the current level of pain medications were working, and how the window of effectiveness was shrinking with each dose. He just nodded his head and told me to make sure that beyond everything, my job now was to make sure she was comfortable once I got Jessica home. His said that we were now down to just a few days, no longer the initial time of up to 3 weeks.
Jessica came home for the final time that afternoon. The Hospice nurse was at the house, and Jessica was made as comfortable as possible in the surroundings she wanted to be in. Family and friends were by her side for the next several hours, and I kept vigil by her side for another night, administering her IV medications every two hours as prescribed to keep her comfortable.
Nurses arrived early Friday morning, and reviewed the medication and activity log I kept which described what I was seeing in her condition overnight. After an examination, our nurse told us to prepare, and that we only had a few hours left. Jessica took her last breath at 9:12pm that evening. She was surrounded by family in her final moments, with her bunny Blossom guarding from under her bed. She was not in pain, which was something I had promised her, passing peacefully in her sleep.
Jessica had hoped that this blog, and her story be a source of both inspiration and hope for others with cancer. Not just lung cancer, but for any illness that we as mere mortals fall victim to. She didn’t think of herself and a patriot or fighter, but just someone that “did what anyone else would do” in here situation. She was not religious, but did have faith in the science that was being worked on by so many researchers around the world. It was that faith that pushed her to seek out the latest treatments and drug trials, both of which extended her life from the initial diagnosis in November 2011 of 10 months, to almost 2 1/2 years. I will be forever grateful to Dr. Robert Roush and his team, for every stone they turned over in order to get Jessica the best treatments that were available in the country. We both believed in him and his team, and they never let us down.
Jessica would want to be remembered for her love of animals, and her devotion to them in both her volunteer work, and for the many who still reside on the family farm, especially her pony Shadow. She was an advocate for the cancer community, and many of the articles she wrote are listed throughout this blog. She also never believed that anyone “loses their fight to cancer,” and would debate anyone on the topic all night long. I will remember all of the wonderful places we went together, and the time we spent together. The big grin on her face when she climbed into her MINI Cooper, dropped the top, and took off down a windy road. And the peaceful look on her face while holding her bunny Blossom, or the two of us just curled up on the couch together. I miss you so much Jessica! You were my better half, and the love of my life! Goodbye for now, baby.
Hello, my name is Wayne Gossger. Seth and Jessica are really close friends of mine. It is with deep regret that I need to inform you that Jessica has lost her fight with cancer and has passed away Friday evening on March 28, 2014.
Seth is trying to deal with this and cannot write an update to Jessica’s blog at this time. He promised Jessica that he would write a final post after she passed, and I’m sure he will at some point, but now is not that time. I wanted to help him out by providing something to post so all of you are informed.
All Seth and Jessica’s friends and family are now rallying around him to help him in this difficult time as well as helping Jessica’s family.
I would ask each of you to say an extra prayer, hug your loved ones a little harder, and stop and make time for anyone that is struggling with such a disease.
At this time, all I can do is remember all those great times I’ve had with Jessica. Attached is one my favorite pictures of Seth & Jessica. We went to a minor league baseball game with a large group of friends and had one of the greatest days ever. This was well before she learned of her cancer. Not a care in the world, just all of us enjoying life and living in the moment.
I understand that when she found out she had cancer that she was given 10 months to live. She ended up enjoying over two years and I was lucky to help her enjoy some of that time along the way, when she was able. I know Seth and Jessica definitely made the most of it.
Jessica, you have inspired many who follow this blog, you provided hope for us all, and made us all want to be better people. While you’re no longer with us physically, you will live forever in our memories and our hearts. We look forward to making an incredibly well-deserved toast of scotch to your life and your spirit.
June 2007 at Campbell’s Field
My name is Seth, and late last year, Jessica asked me if I would write a post or two to her blog once she was unable to. This blog has been both therapeutic and rewarding to her, and it is her wish that this journey is recorded, and that everyone who has so graciously spent their time reading this blog have some closure, whenever that time comes. That time is not yet here, so I will do my best to honor her wishes. I promise that this will not be my final post for her, as I am sure I will have more to share about the amazing person I have come to both love and respect these past 8 years.
In the past few weeks, Jessica has been fighting nausea, seizures and extreme head pain. All of these which are a result of her lung cancer which has metastasized to the now 25 tumors in her brain. All of her tumors have had “significant growth” in the past two months, the largest having grown to 3cm. As I sit here now, we are still at the hospital, but I expect to have her home later today in Home-Hospice care. Last night, I found the following draft of a blog entry she was composing on March 16th. I know that this was not complete, but I think it gives a hint of her mindset during this period of time.
First, the background of the post. On Saturday, March 8th, we drove down to the new farm so that we could “farm sit” while her mom made a quick trip back to WV to retrieve some last minute items from the old farm. Unfortunately, Jessica had what we decided to call, “an episode”, that lasted about 30 seconds. That “episode” resulted in the obvious call to 911, who quickly arrived and checked her out. By the time they had arrived, she was feeling fine, and we decided to not go to the local hospital near the farm since they didn’t have her records anyways.
And now, her post as I found it in draft form from March 16th:
I’ve been starting to think a lot about the process of dying. And I don’t know why it’s comes to mind other than maybe this is just the time that it should.
I suppose no one has the opportunity to go back and do it twice. Right now I can only speak on the feelings I’ve had around my seizures, and whatever the event was after, and the feelings I’ve had since. Sometimes a very smooth spherical cylindrical funneled like, and if I can allow myself to let go and not be scared for her even the smallest moments of time, they are creative fun spaces full of happiness. Sometimes I feel like there’s a playful dangerous yet still very safe fun place that’s very very available to me. I think I have Shadow, him target riding along the very beginning of trails on the farm and in Brogue or Windsor whichever.
I remember when we did our Foxhunt, and my main concern wasn’t that I would get hurt but that he would get hurt when going down one of the rocky hills and into the road.
I don’t know what to think of the combination of these fluid and solid examples that are being presented to me.
This really has me wondering if my brain is starting to form its final reorganization. Or am I just going mad? Or is this the actual reason people do go mad!?
Originally drafted March 2nd, 2014. Redrafted, edited, obliterated, and corrected no fewer than 68 times since.
The side effect I’m about to share with you is something that may be temporary or permanent. We don’t know whether it is an effect of medication, disease progression, or both. Therefore it is important that we all (YOU) remain calm and not jump to conclusions on what this means for my future: short and long-term.
I’ve lost and continue to lose varying degrees of muscle coordination and strength on the left side of my body. So far it has affected my left leg, arm, hand, foot, fingers, and toes.
I lost functionality gradually over the past two months. And though it will be more melodramatic than I wish, I feel the need to document many current limitations:
Legs/Standing: I can no longer climb my interior stairs. (I’ve tried every possible way: one step at a time, both hands on the handrail, seated…) Standing is something to be done very deliberately and very carefully.
Arms: Dressing and undressing was already getting more frustrating, but I try to write off things to changes in daily routines. Then two weeks ago we went to a great concert. Seth and I thought I would be okay being near the handicapped seating; needing to constantly stand so other patrons could pass stressed my body too much, and before long, I was just slinging myself to and from the railing.
Before that, we were only one song in when I realized I couldn’t clap. Unbelievable. It was a real “aha!” moment, in a very bad way. I don’t go around looking for problems. It’s only after they’ve spit in my face day after day, week after week, that I finally realize that a pattern exists.
Hands/Fingers: These are, by far, the worst. Most days I cannot write. I cannot text. I cannot sign my name. I struggle to perform basic functions on my iPad and iPhone. I cannot stack food on my fork to eat my salad. I’m a bit more successful with a spoon/chili when I don’t drop the food before finding my mouth. It’s not simply lack of coordination, either. When I get close to touching a specific point, picking up a small object, or trying to grasp an item, my left-hand and digits shake uncontrollably.
What do I need now?
1. A chairlift so I can get to my shower!! Insurance won’t pay for one so I’m going to open the phone book and start shopping. I need to get one put in ASAP; used ones seem to start around $2,000, so I’ll be in Love Fountain to both bathe and collect funds during upcoming, warmer days. That’s multipurpose!
2. To quit bitching and keep typing like a newbie. A better voice-processor for iPhone 5 doesn’t seem to exist, so I’m trying to just type faster with my right (and only one) thumb. If there was a better (even paid option) for iPhone5 voice processing, I would gladly try it. Please let me know if you have a suggestion by replying to this post!
Either way, with this new disability and painful inter-cranial pressure changes (more on that in another two weeks?), life seems to have become only one struggle/complaint after another. Many things make me very sad or embarrassed. I struggle to sleep more than an hour or two at a time during the day or night, drugs or not. I don’t want to be seen as the person who is sad, tired, and unhappy. I’m working with my doctors to find the right meds so I can feel happy and enjoy the time I’m trying so hard to preserve!
I do just want to thank again everyone who has helped with my fundraiser and Frog List since the beginning. My happiest times are spent with Seth, my mom, and my animals. It’s just wonderful since we moved my mom and the animals to be close to me! That really was and is the most important thing for me, to have my loved ones as close as possible.
Each February I blog when we celebrate the birthday of my first pony, Shadow. ( This post tells you more about our special bond.) This year Shadow is turning 38 years old – or so we thought…
During the move, my mom found the registration document from when I first adopted him. At that time, the veterinarian’s guesstimate as to his age would have been much more accurate. And using that information, well, that means that Shadow may have celebrated his 42nd birthday today!
Happy Birthday, my sweet boy. I’ll bring you something special on Sunday!
Success!
The move is complete. My mom and our animals have safely relocated to eastern Maryland. If I pick up the phone and say I need her, she can be by my side in one hour and fifteen minutes flat. That gives me the piece of mind I’ve been missing since I was diagnosed more than two years ago.
The weather completely botched the move schedule and condensed an 8 day plan into 3. It wreaked havoc with our tasks and nerves; unfortunately this means a future WV trip will be needed to complete some little projects. But still – the move complete, and it’s coming off The Froglist!
We Now Return You to Your Original Programming
I still have cancer. No, that’s not news; but I’ve been distracted by planning and executing a very complex move. That said, I owe my friends, readers, and this chronicle itself many updates (or lowlights, as they may be.)
The Scans
After three months of Camptosar, I had scans in early January to see if it was working. The PET scan was unofficially stable: there is nothing significant enough that we have to deal with it. I think it’s a nice way to say “yeah, cancer may be growing/spreading in your lungs, but there’s nothing we need to tend to right now.” And it’s absolutely not measurable. (More on that later.)
In contrast, my brain MRI was a virtual shit-show. (My technical terminology, of course.) I have new spots. All are small, less than 1 cm, but the people who read the scans and write the reports didn’t even bother to count them. Dr. Roush told me about one or two old, zapped ones which may have shrunk; he seemed like he was desperately reaching for something positive to say.
Nothing is CyberKnife-able (boo) or surgical (yay), and for the first time I understood that anything we do from here on out is a chemical solution: pill or infusion, trial or FDA approved. Those are the tools that remain.
Trial Tribulations
Armed with crummy news, Seth and I prepared for the drive to Massachusetts General Hospital in Boston. We thought we would meet once again with Dr. Alice Shaw and enroll in the next available drug trial for ALK+ lung cancer. It’s good we called ahead…
There is a drug in trial that is showing promise for ALK+ lung cancer that has metastasized to the brain. Unfortunately, I do not meet the requirements for the trial. Specifically, the patient must show measurable tumor growth in the lungs. Not only are my lungs generally stable, I’ve never had the kind of lung tumors that could be measured in centimeters, for example. The drug company could change the rules and remove or relax this requirement in the future. But for now, there is no trial available to me.
For Now
At the end of January I began a chemo drug called Temodar. It’s used to treat primary brain tumors, which I don’t have, but both Dr. Roush and Dr. Shaw thought it was a logical next step. The key is that it is known to cross the blood-brain-barrier. Common side effects are messed-up blood counts and fatigue. So far my counts are acceptable, but I have experienced some other popular side effects like headache, nausea, and fatigue.
I have a growing list of other issues and concerns which are common with brain lesions and swelling, but I’m not ready to discuss those in detail. My oncologist and neurologist are adjusting the doses on a couple medications to try to mitigate some of my overall unhappiness.
It’s been difficult to stay in touch with my closest friends… to even know what to say. Many days I feel like I’m falling apart; some days I actually am! And I don’t have the energy or desire to lie when they innocently ask, “How are you doing?”
There have been many DIY projects associated with the purchase and move, and realizing all the things I can no longer do has made me feel very inadequate. Most of these are things Seth and I enjoyed doing together too. Now I just watch as he replaces electrical outlets or installs a new faucet (my fine motor skills aren’t very dependable lately). It’s also frustrating to require help to accomplish anything. (In other words, I’m obnoxiously needy!) I know Seth loves me and would do anything to help and include me, but I miss being his equal partner-in-crime during our DIY and other miscellaneous capers!
The H Word
On Monday my oncologist brought up the topic of “hospice” for the first time. Once a patient decides to stop curative treatment, they transition to hospice. As I understand it, insurance officially stops paying for anything meant to cure the person and instead focuses on what’s needed to provide comfort and symptom relief. (It’s not that we ever thought I was curable, but receiving CyberKnife, WBR, and chemo are considered such.)
I’m glad he brought it up. There had to be a first time, and now the door is open to continue the discussion. I’ve been able to deal with a lot by pretending my situation isn’t as serious as it is. And I know beginning hospice doesn’t mean I will die by a certain date. I’ve read a few stories where people flourished and even lived for a few “extra” years once they make the transition to hospice. It makes sense that some people thrive once they are out from under the thumb of constant treatment.
I feel that I should do some homework and interview a few in-home hospice providers. I’ve made a couple calls and left messages in the past, but I chicken out and never answer when they call back. My oncologist casually recommended a close, small place that has 10 “very nice” in-patient hospice rooms. I understand the benefit of having a nurse available 24/7, but I think the comforts of home will probably trump all!
Hopefully this conversation is premature. Hopefully new tumors stop appearing at such an alarming rate. Hopefully I stop becoming more and more symptomatic! I wish I knew my timetable, but there is no way to even guess. The immediate goal is to reduce the negative impact of chemo and other meds so I can spend more quality time with my loved ones. And hopefully Temodar will keep new tumors from sprouting while I’m busy enjoying life.
Jessica’s secure fundraising site is accessible here.
While coming to terms with my diagnosis, I realized there are experiences, moments – even things – that I want for myself. And these are consistent, no matter if my timeline is to be measured in one year or ten.
I felt a lot of pressure to track these things via a “bucket list.” But my imagination kept teasing me with this very literal vision of a stainless steel bucket far too cold and anonymous to contain hopes, dreams, and otherwise fun things.
I needed something that was more… Jessica. It had to have an animal-association, be a bit humorous, and have a touch of whimsy amidst such a serious topic. And thus, The Frog List was born! It contains all of the things I want to do before I CROAK!
It was a soft launch: I simply added a page to my existing blog. But soon two very cool supporters assembled a fundraiser page which would draw attention to my list and the resources needed to make it come true.
The fundraising is managed and secured via YouCaring.com. It is a fee-free service which connects people like me and the folks who have the means to help, no matter how small or large the donation.
Knowing my needs and wanting to be as practical as possible, we took a guess at time and donation goals. I extend the time deadline from month-to-month, and I’m not quite halfway to my $10,000 goal. I feel it is a lofty, but not unobtainable goal, given the experiences of other YouCaring users in my situation.
Some donations are monetary. Others are donations of actual experiences or items on the list. Either way, it’s important to me that I keep the site updated so the generous donors (and potential ones too!) know exactly how The Frog List has made my life easier and more enjoyable.
To date, the following items and experiences have been donated: a special lightweight wheelchair, NASCAR race tickets (and Hot Passes), Cirque du Soleil tickets (and meet and greet), and George Strait concert tickets (in progress!).
I would like to give an idea of where the cash donations have been spent too. Some of the larger expenses have been: flights/hotel/car rental for the NASCAR race; gas for trips to see my mom in WV; and making sure everyone who wants money at least gets a minimum payment. My Rite Aid prescription bill alone rivals most car payments!
While visiting friends and family for Thanksgiving, a friend gave me some really good advice. “Don’t be shy to extend the date or the fundraising goal as things change.” Her youngest daughter was born with some huge medical hurdles, but luckily she’s a thriving happy little girl today.
My friend’s words of wisdom revisit me often these days. We are nearing completion of the most critical item on my Frog List: Move my mom closer to me. We found the new farm, and the move is about two weeks away! We must sell the existing property ASAP, but having my mom close to me will outweigh the stress of an extra mortgage.
I’m so excited it’s finally happening. I have lived through two years and two months of bad news, treatments, and hospitalization with her too far away and me too unwell to make the frequent trips I once did.
Through all the planning, I just realized that I’m going to need different accommodations at the new farm than I have had in WV (the existing farm).
Most waking hours, in order to be physically comfortable, I need to lie down or at least recline. (In fact, I often measure how well I’m doing by how many hours I was able to spend out of bed on a given day.) At home, I have a daybed in my living room. I replaced my loveseat with it about six months after my original diagnosis.
Having a bed downstairs also allows me to avoid my arch enemy, stairs, on most occasions.
At the farm in WV, I have been spending more and more of each visit isolated in the guest bedroom because there is no place for me to lie/recline comfortably in the living room.
Therefore, I want to buy a sectional sofa (maybe with a recliner) for the new farm. I want to have a place I can be comfortable and interact with everyone during waking hours.
I definitely think this warrants an addition to the Frog List. I wouldn’t spend money on anything fancy; it seems that a basic sectional starts around $1000. (It just has to be very comfy!)
This started me thinking: How do I decide what I should add to the Frog List? I came up with two criterion: 1) Will it make my daily life easier or more comfortable? 2) Am I the primary benefactor? I am happiest when the ones I love are, too; but when asking for such generosity it’s important I remain focused on the goal at hand. (By the way, asking for help is very hard.)
Right now that’s the only ad hoc (and somewhat immediate) item I want to add. Yes, I can use all the help I can get with mountains of medical and living expenses; and I’ll be reaching out to a few key folks when it’s time to say “I do.”
But I hope to order my “comfy place” before the end of February. Thank you for everything you’ve done to date, and in the future, to help me fatten the frog!
Jessica’s secure fundraising site is accessible here: http://www.youcaring.com/medical-fundraiser/jessica-s-frog-list/84760
Seth and I decided to go very light on gift-giving last year. And after an unexpected August engagement, I had received the only physical “gift” I might hope for from Seth.
Like many of my friends, I appreciate the intrinsic satisfaction gift-giving brings. Receiving gifts is nice too; it’s a chance to have some fun with friends, see how well they know you, etc.
In the past I’ve known people who will spend the entire year judging or otherwise measuring their relationships based on how much ‘thought’ (read: money) was spent on their gift. There are different kinds of relationships and people in the world – and I suspect these are some of the shallowest. But that’s okay. They make me giggle, and I have the time to judge. (Hahaha, I’m FAR from flawless!)
All this rambling is to tell you about one gift I received this year. As Seth would say, “It broke me.”
I have a huge heart for animals. But beyond that, I think I’m pretty average, maybe a little tougher than usual. Hallmark cards and movies about separated lovers don’t make me cry. I’ve never been moved to sponsor a fly-covered malnourished child shown on TV commercials. (I can’t watch the animal abuse commercials, though!)
I’m sensitive, but for most of my life, I’ve successfully kept it secret. I’ve decided to open up a lot since my diagnosis, but the open demonstration – exposure – of feelings is still a struggle.
For all of those reasons, even my mom was surprised when she handed me my gift. I opened the tiny box and had a complete break down.
She found an artisan who weaves jewelry from horse tail hair. Back in August, my mom clipped a (surprisingly thick!) chunk of Shadow’s tail hair and mailed it in. The resulting gift was a beautiful bracelet delicately woven from Shadow’s tail hair and sized just for me.
I bawled tears of joy. Then I cried some more. It is so special and thoughtful. I have yet to wear it; although the weave is very sturdy, and it seems perfect. There are no short hairs poking out like when I would braid my own hair.
I’m not sure I’ve ever received such a unique and thoughtful gift. Just like the pony it came from, I will cherish it forever!
This week the battle for Compassionate Use in cancer trials laid to rest one of its bravest: Andrea “Andi” Sloan.
Andrea, a 37-year-old attorney and horsewoman, was diagnosed with ovarian cancer seven years ago. For much of that time she participated in the more traditional therapies: surgeries, chemotherapies, radiation, and even a stem cell transplant. Then in 2013, she created global awareness when she formed Andi’s Army, a group on a mission to allow she and others access to trial cancer drugs, not because the data could benefit a manufacturer’s launch of a drug, but instead because it could help improve or extend a patient’s life. This is commonly known as “Compassionate Use.” Andi’s Army released this very eloquent statement. Andi may be gone, but her mission will live on.
Statement from Andi’s Army on the passing of Andrea Sloan
“Dear Lord, let me live each day so that when I am gone it can be said, ‘She was a woman of determined faith, happily resigned to fate, who drank Joy for breakfast as if it were coffee.’”
– Andrea Sloan
On January 1, 2014, our dear friend Andrea Sloan passed away due to complications from pneumonia. In the midst of our grief, we remember her with gratitude. She taught us about courage, hope and the resilience of the human spirit during her valiant seven-year battle with ovarian cancer. Andrea entrusted her legacy of compassion for all creatures to us. She was determined to bring meaningful reform to our nation’s regulatory system through changes to compassionate use policies for terminally-ill patients. Andi’s Army is committed to seeing her dream realized, and we will in due time. Andrea’s joy for life was contagious. Please join us in honoring her memory by sharing and appreciating joy in your daily lives. As the American rock star Tom Petty said, “I won’t say goodbye my friend for you and I will meet again.”
In lieu of flowers, donations can be made to the Texas Advocacy Project or to the “Moon Shots Program” at MD Anderson Cancer Center in memory of Andrea Sloan. Memorial service plans for Andrea are pending and will be announced when available.
News coverage about Andrea.
stage iv 