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.

Anyway, all insignificant in the big scheme of things really. I’m out and prepared to move on to the next step which is hopefully the clinical trial in San Diego. Monday the phones will start flying again and everyone involved will be fighting for me to get into this in the hopes it can save my life.

I am sore and frustrated by remaining pains and irritations that were not solved despite the enormous changes that took place within my body over my four-day stay at Barnes. I’m not sure of the exact numbers at this time, but several liters of fluid and blood were extracted by chest tube through my side from my lungs and pleural areas. I still have specific new and/or old pains in my right pinky finger moving up the right side of my forearm, kind of like a sore straining pain; also a bloated crampy feeling in my right abdomen, which I and everybody else thought would surely go away with this fluid flush; and also the neck pain.

Temporary pain related to this latest stay, that should definitely go away with time exist where the hole for my chest tube way in my right side and just general hospital soreness from laying in bed for four days straight and that bed being small and cramped. I would normally be as active as possible when in the joint, but this time was different because the chest tube drainage gear was really hard to haul around and I was on O2.

Thank you everybody for your incredibly kind and supportive emails and comments on the blog. These are truly what keep me going. I love you all and please stay tuned for more frequent updates.

Peace.

Jason

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.

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Hey all–

I have tons of great things to share about my latest trip to visit Gavi in San Francisco including a huge album of awesome pictures, but I just had to first vent about my awful travel experience tonight because it’s what’s on my mind and bringin’ me down hardcore right now. For a little background, I wasn’t even planning on traveling cross country from San Francisco to Baltimore. It was only supposed to be a one-day monthly study visit here (which I think I mentioned and touched on my frustration with that in my last post), but that turned into a five-day scan-filled clusterfuck of a trip and here I am. Four more days of cancer and airline fun ahead of me before a break… Read the rest of this entry »

The big summer of transition continues to roll along at an unbelievable pace. Sometimes I just sit back in my truck at a red light and let out a huge breath, thinking about everything I have going on right now. It’s seriously insane, even for somebody without cancer. I tend to move at paces like this motivated by a subconscious kind of fear that if I don’t squeeze it in now, I will never get a chance to do it. Anything can happen anytime, so that’s why I am pushing myself a little bit harder now while I am feeling and doing well. Read the rest of this entry »

Hello to all of my faithful blog readers. Again I feel like I must start with a brief apology for not posting in a long time. After the huge great-news post from June 23rd, I have been inundated with all kinds of supportive and congratulatory comments (50+ thanks everyone!! I read them all), emails, phone calls, celebrations, etc. It has been so nice and I thank everyone for these messages. It feels awesome to know so many people are following my progress on Team Jason. I have heard from so many people that I didn’t even know were reading the blog or cared about me. Even more surprising, my blog has infiltrated the medical and pharmaceutical communities, which is an interesting aside that I will get into later. It also goes to show how people always like to be involved when there is good news to share and celebrate as opposed to how they shy away when times are tough. I guess it’s just a comfort thing. Wish I had that choice! Read the rest of this entry »

The MRI was basically in agreement with the PET scan results that we received a few days earlier. It pointed out some significant reductions in the amount of lesions and visible cancer on the bones and noted some areas of activity that we already knew about.

I’ve been getting a lot of questions about the trial medication I’m on, so I thought I would give you a full run-down of GDC-0499, or as much as I really know. First of all, I am on a high dose of this medication, relative to the other doses available in the medication diary they gave me. I take 540mg a day, first thing in the morning when I wake up, at least one hour before I eat.

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I am continuing on medical leave/short term disability this month since I am still transfusion dependent. This means that I have to go down to Siteman twice a week to get blood work and most days I need at least one bag of blood product. I’m sure I’ve explained this before, but with my cancer invading my bone marrow for the second time, it has really compromised its ability to hang onto and produce a safe level of crucial bloodparts. More specifically, I am often needing platelets and sometimes red blood cells. Today, I had an 11:30 appointment and did not leave the hospital until after 6pm. Yeah. No joke. There are constant delays in the blood bank and last week I even had to go home without my blood product because they didn’t have anything that matched what I needed. I am planning to promote a platelet drive on this blog soon and have somebody doing some research into the best way to do that. Read the rest of this entry »

Yes, you read that headline right.

I have some amazingly good news to share on this early summer evening. Today on our first monthly study visit at Johns Hopkins for the Hedgehog Pathway Inhibitor study, my study nurse delivered the PET scan report from last Thursday that serves as the main measurement tool of efficacy for the trial medication. In 4+ years of on and off cancer treatment, it was the most positive, upbeat radiological report I have ever received. It gives every indication that these two little green pills I take every morning, an hour before I eat, that are ten years from market, are shrinking and destroying cancerous tumors all over my body. This thing is working!!!!!!!!!!

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