Today we planted a tree in memory of Jason in our backyard. After a couple weeks of creating a new flower bed, we held a small ceremony with family and friends. We sprinkled a small portion of Jason’s ashes in the hole just before inserting the tree. A small plaque will be placed in the flower bed which reads “For our beloved Jason.” The tree will serve not only as a memorial, but as a place for reflection.
-Joel, Bethe, and Keith
It is with deepest sadness and a broken heart that I must tell all of Jason’s friends and family that he passed away today-September 23,2008. Please keep in touch with Beth and Keith at bbrightfield@yahoo.com. The service will be on Sunday September 28th at CRC (Central Reform Congregation) on Waterman in the Central West End at 1:30pm.
Please consider making donations in Jason’s honor to the Wellness Community of St. Louis at 1058 Old Des Peres Road St. Louis MO 63131 or www.wellnesscommunitystl.org This organization helped Jason immensely during his 4 year battle.
Click on the picture below and look at his grin! Jason never lost his fighting spirit and paused for this picture when he was being transferred from Siteman to the Rehab Institute on September 13th. Subsequently, Jason was transferred back to Siteman a few days later.
I’ve been dying to update my blog for days now, but it has been really difficult due to various circumstances. My last blog was really sloppy from what I can remember (can’t see it at the moment) and I want to clarify and update everyone on my situation at the moment. First things first, I have been staying since Sunday at The Rehabilitation Institute of St. Louis, or “TRISL” as they refer to it here, which is a good facility and a great next step for me, but they do not offer patient Internet access.
So I haven’t been able to respond to any emails or comments on my blog. Thanks to my iPhone, I have been able to receive and read most email that goes to my personal accounts, but am only really able to respond to ones that require a quick one-liner. So don’t worry—I am getting your messages and they are helping me tremendously as I feel so isolated here without my buddy the World Wide Web. Other circumstances affecting my ability to update the blog would obviously be my transition from Barnes and all the bull crap that comes with that. I will get into that a little bit later, first onto the important stuff like how I am feeling and answering everyone’s questions from the correspondence that I have been receiving.
The transition to rehab has proven to be a great step forward and I am making really good progress on all accounts. I am headed out this afternoon (Tuesday) for my last of eight radiation treatments that were part of the plan that I have yet to discuss in the blog I just realized. Last week, as soon as I was admitted to the oncology service, we started what we knew would be a short series of targeted radiation to the vertebrae where my spinal compression symptoms were. Between Sunday and Tuesday, Dr. Simpson targeted the radiation area even further, and then the last five days were quick and easy—all the same targeted areas for the same treatment time/dose. For those unfamiliar with radiation therapy, you can refer to my nifty FAQs I think for a definition, but basically it’s where the patient lies on a glass table and a large machine shoots beams of radiation into the tumors to kill them. Very lay definition.
This is a photo the ambulance drivers took of me when they were transferring from the hospital to the rehab institute. You can kind of see my back there on the stretcher but I don’t think paramedics make the best photographers. We supposedly took a few more pictures when we were inside, but there were none on my camera when I went to upload…
[Can’t upload the pic right now, but will try to get it up when my signal is higher.]
So, continuing to explain the plan, the radiation is meant to shrink the tumors causing the symptoms like the inability to walk and improve my strength and balance. The physical and occupational therapy I am getting here at TRISL is meant to further those same things. Even after two and a half days here, I truly feel much stronger and feel that my balance has improved significantly. I have to use a wheelchair to get around—this is a seriously tough position to be in for the first time. I am making progress on using a walker, but my ability and allowance to practice that with the safety of a professional physical therapist has been significantly limited. It’s unsafe because my platelets are extremely low and the risk of a fall could put me somewhere bad with internal bleeding or a hemorrhage, most dangerously on my brain.
So…I took a few hours break (well, the entire afternoon and evening) since writing the previous portions of this blog post and now have a significant setback to report that further involves my blood counts. I have been unable to hang onto platelets despite receiving FOUR bags transfused over the last two days. My platelet count as well as my white blood cell are dangerously low for the second time in a couple weeks (the first time being that night I had to get an emergency transfusion in San Diego. In fact, my white count is at 0.5, which is extremely dangerous and makes me very vulnerable to fever and infection. Despite transfusing four bags of platelets over the past two days (albeit they were small bags, but still) my platelet count has only moved up and back between 5 and 6. Yeah. 5 and 6. Most people run platelets in the hundreds and thousands. Mine, when healthy were around 140ish I believe. I don’t really know for sure, but for now we’d like to keep them at 20 instead of at 10 so we don’t get into these positions.
Anyway, the bad news is I have to transfer BACK to the regular hospital where they are much better equipped to treat these other dangerous medical conditions. Here at the rehab institute, which is part of Barnes and right down the street, they simply are not prepared to treat these kinds of problems. My biggest complaint is still the bloating I have in my abdomen. It’s huge, probably an extra five pounds seriously. It’s not painful, but just unbearably uncomfortable at times.
Many docs have thrown many different possible causes into the mix and I wholeheartedly believe it’s a combination of some of these. First and foremost, it’s likely a result of the large mass just behind this area that has grown. The reason we can’t treat this area with radiation and just zap it away (or stick a needle in my belly and watch it deflate!!) is because it’s too close to the right kidney and it’s not at that point where we would risk compromising the kidney since there are two. I definitely agree, but wish it wasn’t the case because I think would give me the quickest relief. I may look into cyber knife radiosurgery, which is extremely targeted and wouldn’t hit my kidney. That’s down the road though.
I feel like I am rambling and it is getting real late. Bottom line, Here’s where I stand: (haha no pun intended…maybe) I am being transferred back to the oncology floor at Barnes/Jewish/Siteman Cancer Center Wednesday first thing. I don’t know anything about the details of this transfer but once there I will be fasts-tracked. I am going back there because they are much better equipped to handle the low blood count issues I am having and when I am finished, I imagine and hope I will move straight back to TRISL and continue the therapy regimen that was just being established and get home and back to a normal quality of life where I can WALK. I need to walk again. Walk walk walk. This is all I am asking for right now.
In the bigger picture, we have to find a systemic treatment that is ready to roll asap so I can live. We need to find something fast because my cancer is growing fast. My Aunt Linda, bless her heart, may come in to St. Louis next week to help us really hunker down and work the Internet and phones and all of our oncology contacts and specialists.
For all those that are offering help and wanting to do something and wanting to visit, we can definitely use you and appreciate your offers. I just have to coordinate with my mom. Food and company here at the hospital is always welcome, but visits are very limited right now because of my white blood cell count. Don’t come at all if you’ve been sick recently in any way. It stinks, but it’s just how it is. Visits should always be brief, like a half hour at most, because I get really tired and it gets old talking about the same old shit. I know you are there for me but I do want to see you and eat your good food, even if we have not been in contact for a long time. This is a big serious crossroads in my treatment and I am absolutely determined to take the right path. I need your help and support to get there.
I love you all and please just keep thinking those positive thoughts. I will have Internet access at Barnes, so yeah, that will be more convenient for us than the last few days here. Look for a short update soon as we formulate a plan to figure out what’s going on with my blood counts this week.
~Jason
Hi all–
This has to be quick and to the point because I am freakin exhausted but I need to write this for my own sanity. My symptoms took a turn for the worse over the last couple days of last week and then over the weekend.
I started walking with a cane on Saturday for the first time ever and then Sunday I was admitted to the hospital after a nasty 5am fall when I was getting out of bed to go to use the bathroom left me with a huge bruise and scrape. My legs just gave out from underneath me and I couldn’t walk.
I have been here only just over 36 hours but it’s been a whirlwind. We never thought anything would get done coming in on a Sunday but it did. The plan to reverse the paralyzing effects of the tumors on my spine are to radiate those tumors and kill them or shrink them enough so a systemic treatment can wipe them out completely. There are obvious high risks, but we are in a really tough situation.
It’s extremely stressful. I have never experienced the feeling of being completely immobile and it is scary. Really scary and helpless. I am doing everthing I can and feel I am in good hands and surrounded by great family and friends. Besides the radiation, there are a lot of GI issues because they’ve increased my pain and steroid medications a lot.
I will be slow and brief to respond to your correspondence but know that it helps. Those in town wanting to help just let me know and we can likely find you a job. My brother and grandma are coming in this week, too which will be tremendously sweet. Speaking of, thanks so much to those who have been by. If you want to visit, always call first because I never know when they are coming to get me for one test or another.
I already feel improvement from the day before and am still hopeful. Pray for me and keep that hope alive!!
Hello family and friends…I wasn’t able to post immediately after we ‘got in’ to the trial. It wasn’t much of a getting in, like the last one. Basically my feelings on the Thursday before Labor Day Weekend were correct, so when we showed up it was basically just assumed that I was doing this. My mom and I were relieved and so were a lot of other people that I have been able to tell before writing this post. Anyway, I’m in. I started the study medication right away and have been on it now for…let’s see, about 4 days. No major side effects as of yet that I can speak of. There was a twinge of slight nausea, but I can get something easily to treat that if it continues. I haven’t noticed it lately.
This is a dose escalation study, which I understand is very common among Phase I trials. What I think that means for me is that for some period of time, I will receive a certain dose of the new drug and then at another time I will be switched to a higher dose. Just to be clear, because I have gotten this question, there are no placebos in cancer trials or I guess any medical trials at all. It would totally unethical.
Along with the study drug, which I take three pills for in the morning and at bedtime, I also take one tablet of Tarceva, an FDA approved cancer drug. The study nurse coordinator told us that this is a VERY small study…only SIX OTHER PEOPLE have been on this drug at their site and there is only one other site, in Santa Monica, where they are also recruiting for the study. I am really surprised it is so small. It makes me nervous, but I feel that with the caliber of doctors and relatives/friends I have recommending this, it has to be the right thing for me.
I am just praying that this works. I NEED this to work. The study is going to be very time consuming and there will be heavy travel, at least at the beginning. I love San Diego–don’t get my wrong–but it’s hard to be away from friends and family when you are in our position. I’m sure everyone understands. It’s really far too. I need to be back for another 12-hour monitoring study visit on Sept. 16/17 and then I will not go home until after my next study visit, which is a quick one-day check-in to get more medication on Sept. 23.
In between, barring something really debilitating, I am going to Planet Cancer’s annual “Older” Young Adults Retreat. The Planet Cancer retreats are something I look forward to so much every year. I have been waiting so long for this one. I just got my ticket today. I am so so so pumped. There is no better medicine than connecting with a whole bunch of other young adult cancer survivors from all over the country from all walks of life going through the same things you are. I pray my pain does not get in the way of my going. That’s the 19th-22nd so I will fly from and back to San Diego.
One really big huge important thing that is not clear to us about this study is when we are going to do imaging to determine if this is working for me. I did a baseline CT scan and I vaguely recall Karen, our study nurse, saying something about after two cycles, which is six weeks I believe. It’s all a little confusing to me and I need to look at the calendar and get it all figured out. Right now we are just focusing on getting back for our second trip, Day 15. My dad will come with me this time so my mom can work.
Enough about the study…I am taking the meds and we will all hold our breath and wait.
In other news, I decided to defer my admission to Wash U for grad school this fall. I’ve just got too much on my plate at the moment and want to be able to really focus when I start the program. Right now I feel like we are in a battle to save my life. It has really become a full-time job between my managing my pain, twice-weekly transfusions and keeping up with all the people who are pulling for me.
I hate to write this, but my pain is still not under control. I feel like there is a lot of new pain from lesions that have grown in the past several weeks. It’s so scary to feel something foreign growing in your body. It’s inexplicable. I just want to take a knife sometimes and dig it out. Okay, not really don’t worry, but the thought has crossed my mind!
The most frightening is the possibility of spinal compression pain. I am feeling weak in my arms and legs and I am so afraid that we are going to have to do targeted radiation or something to treat risky masses. I’m not sure if this will mean I have to stop the trial, but I am just thinking ahead and dreading that kind of decision. I reported these symptoms to my doctor today but did not hear back from him. He wants me to meet with another doctor I know next week. I got this much from my nurse coordinator, who is unluckily going to be out on vacation all next week. Of course there is nothing we can do about it this weekend because even though cancer works weekends, hospitals and doctors don’t. Or at least not for this kind of thing. The worst is that the pain and discomfort is keeping me up at night so sleep has really be at a premium. I got some new scripts and we are upping my Oxycontin again, believe it or not, so I am hoping this helps.
I am distracting myself with emails and piles on my desk of long overdue medical bills and different forms and thank you notes and fun stuff like that. I also have some shopping to do now that I finally have a little cash on hand and a few finishing touches on my apartment. I love my apartment. It’s hard when I’m not able to be active or independent. Right now I can’t really drive safely with the kind of weakness I am having.
I want this study drug to start working really fast and save the day. I realize that we need to start working hard on a Plan B because right now we don’t have one and we are way too far down this path to be caught with more time for this cancer to grow. I am thinking positively but we have to be prepared for the worst.
I was hoping to get this post up a little earlier, but I guess it’s not too too late since it’s just on now. I wanted to promote the Stand Up 2 Cancer fund raiser that is going on tonight on NBC, CBS and ABC. It’s a big huge celebrity-saturated push for donations that will go to cancer research. Check it out if you can. I have two friends that will be on it representing young adults with cancer.
I hope everyone has a great weekend and please keep the hope alive!
It’s amazing what we have accomplished in five days, given the circumstances. Since my last post the night I got discharged from the hospital (or maybe the morning after, I forget), we made the appointment for the trial screening visit, scrambled around for a couple days getting ready for it in St. Louis, flew out here to San Diego the night before (Wednesday) and did it. Yesterday (Thursday) was a really really LONG day. It was just the longest day ever. I felt so awful for my mom, at times I looked over at her and she was just head in hands ready to collapse. I have had some long days that I have related on here and everyone knows how one thing can lead to another. But we basically accomplished two days worth of “work” in one day. Here’s how yesterday panned out, if you’re interested in the details:
A quick note, as I am clearly exhausted, to let everyone know that I was discharged from the hospital Saturday afternoon. As many know, the discharge process can take hour upon hour to get this signature and that set of instructions and pass that test etc etc etc, but we were somewhat used to this by now. Dad and I calmly split an Il Vicino house salad and pizza to celebrate the ol’ D-day and then laid down for our naps, me in bed and dad in the recliner.
It was several more hours, a chest x-ray, port flush and a few other things later before we actually went home, but most of the time was well spent and there was minimal anxiety compared to previous D-days in recent time. I think dad would agree. Read the rest of this entry »
It’s been too long as usual, but I guess we’re all used to that by now. Since the big bad news of July’s study visit, I have been busy as usual with travels, figuring out the next step and executing that step.
My last trip of the summer was to Hilton Head Island, South Carolina with my brother Joel and four great close friends, Dave, Peter, Andrew and Lauren. It was a blast. Everything about the trip worked out very well and we all had a good time. It was so nice to just pick up and get away from cancer, even if it was just for an extended weekend. We spent lots of time on the beach, toured Savannah, Georgia, and relaxed in the huge spacious luxury villa that my aunt and uncle generously lent us for the week. I treated myself to the master bedroom, which I offered to share…but you know how that goes when there’s only one bed and a bunch of straight guys. It was truly a great trip and I am so glad I squeezed it between all of this other craziness.
One of the most significant events to report on since the last blog post is that I did complete the first “round” of Accutane (actually started it that night before I left for Hilton Head), which was taking 14 days of the drug, a retinoic acid used mainly to treat severe acne. It has been shown to treat some forms of cancer, one of those being mine, in certain cases for very logical reasons that I am not going to bother explaining here. Reason being, because it doesn’t look like at this point that it worked for me. So, there really wasn’t much to it, except that my insurance company didn’t pay for it so we (mostly me) are in the process of getting reimbused the over $600 bucks it cost to get this drug for a couple weeks that didn’t do me any good. A very generous donor did see my complaint about this issue in the last post and actually reimbursed the Team Jason account the exact cost of the drug. But of course I feel totally obligated to fight just as hard as if it were my own hard-earned money to get reimbursed because I wouldn’t be taking Acccutane if I didn’t need it, right? Anyway, enough on that.
So I guess that brings us to right about now, or right about a week ago to be exact…I have been home from Hilton Head since the 7th and now it’s the 21st. I’ve been finished taking the drug since the 13th, I believe. Part of the regimen is 14 days off but we don’t expect to see any magic miracles in those two weeks of no drug. My doc ordered a CT of the abdomen, pelvis, chest, and some other major areas on Monday based on some complaints of pain I was having of pain in my lower abdomen and right side groin area. This scan didn’t reveal the answer to that pain (of course not, why WOULD it!?) but it did show a significant build-up of fluid in my lungs of all places and the pleural areas around my lungs.
This fluid is mostly blood and we’re not sure what else quite yet. But it had to come out. So I came in for a quick needle procedure and it turned into several days of draining. I am currently hospitalized and have had two minor surgical procedures, the second of which was to install a temporary drain (they will take it out before I leave here) to clear all of this fluid out of me. It’s a fairly serious amount of fluid. We’re talking several liters, probably when all is said and done I will lose 10-15 pounds of water weight. Yeah. So it will feel like a huge relief, but right now I am in a lot of pain from the installation of this drain-like tube in my right side. Sleep seems unimaginable tonight. But I am going to try my best.
Our focus now has quickly and aggressively shifted to the next clinical trial option, a CMET-Inhibitor, similar to the Hedgehog Inhibitor, but obviously different, that blocks a pathway my medulloblastoma needs to grow and thrive. Right now we have to focus on getting this fluid drained and getting me out of the hospital. I am at Barnes on 7900, but please call before visiting. I am pretty tired and just trying to get out of here so we can be ready to go out to San Diego, where this trial is located, to get me into it. I need everyone’s prayers to make this happen.
This is where you stop reading if you are an eternal optimist, or a member of my immediate family.
Okay. I am more committed to this fight that I ever have been and realize that I have more reasons to live now than I ever have before. And I’ve always had a million reasons to live. I need to get into this trial and it needs to work for me for at least a little while. I am in pain right now, and I am not going to go out like this. The reality is, I have a serious disease, that can either be chronic or fatal. I am willing to do whatever it takes to make it chronic as long as my quality of life does not suffer too much, and I know that all of those around me that love me would never wish me a quality of life that wasn’t worth living. This is such a buzz word. What I basically mean is that none of you would ever want me to stay alive if staying alive meant that I was going to be in chronic pain or permanently institutionalized or anything else like that.
The reality is, based on what I know about my specific situation, and hints/direct answers I have received from my two main treating oncologists, we are nearer that reality than we ever have been before. I am angry at them for telling me this, but also glad they respect me enough to be honest and treat me like the adult I am. That being said, I am not really an experienced grown-up obviously, and despite all of this crazy shit my family and I have dealt with over these years, none of it has prepared me for this. I am going to keep fighting and they are going to help me fight for as long as it takes to stay alive for as long as I can, but we all need to realize that this may not be as long as we all want. More is in fate’s hands now than ever before. I think you get the point. I love you all so much and hope to see you soon.
A few notes on communicating at this time: I am overwhelmed as usual, but love to hear from you. This blog is a great way to do it, or you can send an email or call if you want. Just realize that it might take a little more time for me to get back to you with everything that’s going on.
Love you all. Jason
Well there it is. I have been avoiding updating my blog for a week and a half now, even though in the course of everyday interactions with some people and those who are close enough to get those dreaded phone calls, many people already know. But that doesn’t make it any easier. I also wanted people to enjoy my San Francisco post because it was such a great trip, especially now looking back with the timing and all. I am so glad I got to go out there and see Gavi’s city before another big blow.
So…yeah, those pains I’d been reporting on for several weeks and the fact that the clinical trial sponsor wanted to do scans four weeks early to verify the last month’s results prompted my medical team at Hopkins to ask me to get the PET/CT and full spinal/ brain MRI at 4 weeks rather than 8. That’s what turned a one-day visit into an agonizing five days. Read the rest of this entry »
So, I’m writing to you this afternoon from the lobby of the Sydney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. All has gone well here again today. I started bright and early with a triple-play spinal MRI (cervical, thoracic and lumbar). Mary, the MRI tech was a bit of a beast and a self-confessed “tape freak” which is clearly evident on my right arm crook. I’m funna have to find the lava soap tonight at Tom & Lin’s for that one. But besides that, I snoozed most of the time in the 2-hour MRI, despite having gotten a pretty good night’s sleep last night as opposed to the night before.