Making progress.. Still a ways to go before discharge

Hi all-
Katie again. And typing on my iPhone so sorry about mistakes. . Jeff is doing good. He had two chest tubes placed during surgery to drain away fluids. One of those got removed this am and they will do another X-Ray tomorrow and hopefully remove the last one then. Until those are out Jeff isn’t allowed to get up out of bed so everything else is essentially on hold. He’s not really even supposed to sit up that much. He’s thirsty but gets a very limited amount of water – he’s not allowed to move and they don’t want pnemonia to develop. His throat is sore because of the lack of water so he can’t really talk at all. Once this chest tube gets out we will startthe recovery process. He’ll also probably have a NJ tube placed (feeding tube that goes past his stomach and into the top intestine) to help get him nutrition. This will help him get calories while we get his digestion issues sorted. I’m personally a bit shocked. Because he lost an organ last time an the tumors were so big I thought that this surgery would be a faster recovery- but because they fully cut apart his ribs ( they are wired back together) and the chest tube this one is the harder recovery. It sucks too as Jeff wanted to sit up right after surgery. It’s not that he doesn’t want to do stuff- they won’t let him as he needs to take it slow and let his body heal. We were originally thinking he would get out of here by Wednesday but I’m not sure he’ll make it home before the 14th or 15th. Jeff can’t really talk but can text a bit so feel free to text him. Im also reading him the comments from the blog. He’s not at the checking email point yet. Thanks for all the support!
-Katie

2nd Surgery a Success!!!

Hi all- Katie again. Jeff’s second surgery was a huge success. They were able to get everything in his neck and chest leaving nothing behind. And by the time we got to go up to ICU Jeff was doing amazing. He’s in a lot of pain but his spirit is renewed!

I’ll make sure Jeff posts soon!

Katie

Second Surgery a Go!

This is Katie again. Quick Update:

Jeff will go in for his next surgery at 8:45am tomorrow (Thursday). We have no idea how long it will take since his tumors seems to be so closely connected to blood vessels. He’s doing well and actually kept down some food last night (yeah!). Also I wanted to let everyone know that ALL of the nodules that they found and tested during the first surgery were benign (NOT CANCER) which was great news.

I’ll post after the next surgery!

-Katie

Stuck in limbo…..

Hey All-

This is Katie again. Well we are stuck without any information, probably until Monday when our surgon is back in. Jeff’s CT results could be pnemonia or it could not be. We’ll have to see what the surgon decides and if he wants to do surgery early in the week or just hold until the current slot on Thursday afternoon. Jeff is having a lot of issues with vomiting. He hasn’t eatten since Wednesday and keeps throwing up. They can’t see a block on the CT so they think his system is just still healing and not ready for food yet. It really sucks but Jeff is tolerating it better then most. Thank god for the TPN (IV Nutrition) .

Will update as soon as we know anything!

-Katie

2nd Surgery Delayed

Hey all sorry for delay on update post surgery but I cant put this huge laptop on my injured stomach and sitting to type is still a bit painful. I’m actually writing this a bit piecemeal for the sake of comfort. Also I see Katie got a lot of this so I’m going to be brief.

So first off surgery results:  The surgery was very successful. They ripped out my kidney and basically every infected limphnode below my rib line, and a few just above it. The surgery took 12 hours, way longer than anticipated, but it worked so that’s all that matters. The tumor that was removed was actually about half dead already so my meds were really working.

Recovery: I have been a lot more gung ho about moving after this surgery than the last. I have been a lot better off in general. Pain is at a pretty expected levels and is mainly controlled by the meds (although the meds knock me out too!) I have adjusted to the meds over the last few days so they are starting to not knock me out as much and as my pain improves I’m needing less in general. The only real problem is that my intestines are not really moving yet so I cant eat or drink really well without getting sick. And thankfully vomiting isn’t hurting as much as it did after my first surgery as I can control it better. Thankfully my TPN nutrition is providing everything I need and I’m gaining weight (up to like 136 which is about 8 lbs more then when I checked in).

I was supposed to have the second surgery (details below) yesterday but when they did a stomach Xray to check my healing they saw something abnormal in my lungs. They did a lung Xray and said it was pneumonia and they delayed my surgery a week as they wont open up my bones if there is an infection. (The bones could get an infection and then its really bad and like 6 weeks of recovery before I could restart my drug trial) They did another scan of my lungs today and they are not seeing improvement so that means that either I do have pneumonia and its not getting better or I don’t have that and just have fluid in the lung area which can sometimes happen after surgery, esp after removing lymph nodes. At this point they are guessing the latter which means that they might be able to operate on Monday or Tuesday if we can get the OR booked. If it is pneumonia then I will have to wait until at least next Thursday before surgery. I’ll be getting a cat scan tomorrow AM and we should know based on that.

My Next surgery plan: They  decided to change the surgery to opening up my sternum, cracking me like a crab, which I had honestly thought was smarter in the first place. They need to basically get two more sites, one along my throat and one along my clavical, but the access they need to them would make their originally planned surgery a bit hard. Also the one along my throat was the least responsive, it’s in a bad place, and it’s going to have been off my meds for the longest time so it will probably be the worst tumor and the one most likely to have a lot left behind.  Following surgery I will also get a PET scan to be SURE of how much tumor has been removed. I’m also expecting to be in ICU for like a day or two after the surgery and we aren’t very able to estimate yet what my recovery will be like honestly. So I’m just going to assume a week or so in the hospital, maybe a bit more since they don’t want to stress me with travel as fast as they would be willing to release me to home if I lived here.

I’ll update once we know the surgery date. Photos of the tumor coming soon.

-Jeff

Jeff continues to improve!

Hi All-

Katie Again. Jeff is still a bit to drugged up to type but he’s getting there. He’ll do an update soon but wanted me to do a quick post. He is making amazing progress. He finally got to start solid foods today (Saturday) which means he can now switch to Vicoden and drop some of the more hard core pain drugs. He was really hungry and getting quite annoyed (understandably when hungry) at having to wait – Pedro said he ordered so much food and dug into so quick he thought Jeff might actually try and eat the tray. In addition to real food Jeff has also been on IV food which he informed me is something insane like 4000 calories a day which is awesome!

Jeff has been up and walking and making great progress.  His Second  surgery is now Scheduled for Next Thursday the 28th.

The Dr’s and staff at Cincinnati Children’s Hospital continue to blow us away. Jeff’s nurse from the ICU, Tara, was amazing! (We miss you Tara) And she even stopped by after Jeff was moved out of the ICU to see how he was doing- and on her day off no less!

More to come soon including photos

-Katie

1st Surgery a success! Kidney be gone!

Hi All-

This is Katie, Jeff’s sister. Jeff asked me to give everyone a quick update of how everything is going. Jeff had the 1^st surgery on Tuesday and is doing AMAZING!!! The surgery lasted for 12 hours & they were able to do everything we had planned to do- remove the right kidney, remove the large mass in his abdomen and remove some of the lower lymph nodes in his chest. As they were opening Jeff they did find a few small nodules in his scar tissue from the last surgery that looked suspicious. They sent those off for biopsy and while those were being looked at they found 2 more on his perineum (lining of the “bag” that essentially holds your guts in place (sorry I’m clearly not a Dr.) Well this gave them more cause for alarm and they came out and talked with us about if we should move forward and what Jeff would want. This was really scary as it felt like where we were MONTHS ago in Seattle where they opened him up and didn’t remove anything. The Dr’s didn’t want to continue if the disease had spread. Thankfully though the Dr’s at the Children’s Hospital are amazing and they asked what Jeff would want. We  knew that Jeff would want them to move forward even if other areas were involved and they honored that request . They set in with their task and we waited. About 3 hours later some of the test results came back and it turns out the nodules on the perineum are benign (not cancer). Thank GOD! We are still waiting to hear more about the nodules in the scar tissue but those seem to be less worrisome and the surgeon removed all of the areas that he saw. So after 12 long hours and a simply amazing effort on the part of Jeff’s surgical team they completed the 1^st surgery. They were able to remove 99% of the cancer in his belly (the second surgery will get the lymph nodes in his upper chest and neck). There were a few spots where things were so closely affixed to the blood vessels that they had to leave some cells but we knew that would occur and that’s why Jeff will be going back on his drug trial.  The surgeons were simply amazed at how great Jeff looked on the inside. His right Kidney looks great as does everything else. And they were ecstatic with how the tumor looked. It clearly has signs of “treatment effect” showing that the drugs Jeff is taking are really working. They said that the treatment effect looked similar to patients who had undergone several successful rounds of Chemo- which is just amazing! 

Jeff had yet again another failed epidural -it was in place right he just doesn’t seem to respond to the drugs well. This time however the pain management team was wonderful and really listened and worked with him until his pain was under control. It took a few hours and Jeff was clearly in a lot of pain but he was super brave. Pedro spent the night with him in the ICU. By the time I showed up this AM it was like I was looking at a whole new Jeff. He looks AMAZING! His spirits are high and he is just bound and determined to kick this things ass. He looks better today (12 hours after surgery) then he did DAYS (maybe even a week) after his last surgery. He sat up twice today (both of his own doing) and the Dr’s are actually telling him to take it easy as he is just ready to get moving. His next surgery is scheduled for Tuesday. Since this one went for 12 hours however the Dr’s said they thought it would be unlikely Jeff would be ready in time but with how much progress he made today they think he might just prove them wrong.

 The staff at the hospital is simply amazing as well. Every single staff member is wonderful and the care he is getting is above and beyond anything we could ahve imagined! Jeff has a long list of people we need to send cards to as we are just blown away with the nursing staff and pain management team. In Seattle I didnt know the names of the pain team after a week- here I know them after just a few hours because they took the time to introduce themselves and really litened to us and then checked back in on their own accord instead of us having to hunt them down. And it’s impossible to even express how amazing Jeff’s surgeon and paimary oncologest here are!  It was 100% the right call to go to Cincinnati for all of this.

I also want to say how incredibly proud I am of Jeff.  This last year has been absolute hell and he has stayed strong and persevered.  Watching him today push himself to move and get going made me so proud . He’s a fighter and he will win this thing!

Thanks for all the love and support you all show Jeff- it’s that support that helps him have the passion to fight this thing.

-Katie

Upcoming surgery

Hey everyone, sorry for the late update. I know I mentioned I would be going in for surgery around now so some of you are probably wondering what’s going on with that. Well I couldn’t get it to happen before my birthday so my first surgery will actually be happening on the 19^th and the second is expected to occur on the 26^th. The first surgery will be done to remove my kidney and all the infected lymph nodes in my belly. The second will be done via opening a little window between my ribs and removing all the lymph nodes infected in my upper torso. I have already gone off sorafinib for the surgery too, my last dose was the 5^th but I am still on ARQ197 until just before surgery.

So basically on Thursday they make me fly to buffalo to stop my study and do a scan, then I go to Cincinnati from there and will be there for something like a month before flying back to buffalo to restart the drugs. Also as soon as I am able I think I will be trying to stop by AZ after getting healed from the surgeries.

Not all that much is up. My appetite has improved and I am much more frequently eating meals like I used to (whole boxes of mac & cheese, half a pizza, that kind of stuff). I also am oddly losing all my hair, I still have a lot on my head but like my arms and legs are going bald. It’s a sorafinib side effect, I didn’t really expect it to hit me this late however. If it kicks back up harder when my drugs restart (and I highly suspect it will, my other symptoms may kick start after an absence too) I think I will shave my head and maybe buy a cool cartoony wig; because otherwise I will never get the chance to do either without people thinking it’s stupid. And while I still deeply fear the surgery on some levels my drug addled mind is rather good at staying distracted enough that I don’t think about the surgery; I’m mostly immersing myself in videogames, books, and attempts to improve my creative writing abilities.

That’s about all I have to mention, though I would like to share one new event of medical malfunction. I was originally told months ago that I would need a month off sorafinib before I could do any surgery safely. Then while planning all this out they decided that 2 weeks would be safely pushing the boundary for duration of drugs. Then I got a wonderful surprise on the day I was supposed to stop my drugs, I e-mailed my doctors about stopping and they replied telling me they now wanted me to stop only a week before. Within something like an hour I was then told it was to be 2 days prior to surgery. When I complained that I was told I would bleed to death they told me that they had not really known the drug well but that experts had told them 7-3 days would be safe. They also told me that it was the drug company that decided I needed to do the 2 day mark, and that if I did not comply I would be at risk of not having meds after the surgery. I told them that I didn’t feel safe going to 2 days, but would continue the drug since experts were now saying 7 days and I could believe 7 days. Meanwhile I tried to get a hold of the company and the other doctors running the study (I had been talking with the doctor for the surgery). Then the doctors for the study called me back saying I would need to postpone my surgery because they DID demand 2 weeks prior, as that was what was written on the letter originally sent to them when this was all being set up in the first place. I was also told I am not supposed to call the company myself to try resolving these kinds of issues. But I am still a bit apprehensive as to why my two doctors are apparently receiving different instructions. I am especially disturbed that the doctors were so OK with apparently picking numbers out of thin air. I can understand the month off a drug, it’s somewhat standard to assume drugs are out of your system after 4 weeks. The two week deadline however must have been drawn entirely out of thin air, if the real timetable is something like 7-3 days they must have just guessed a number that sounded good and hoped it wouldn’t kill me. And as to why they were willing to actually go at lower than that recommended minimum I have no idea. This is the kind of thing that really causes me to question my doctors.

Surgery possible

Hey everyone so I got a bit of an update and figured I should share the info. Basically I was wrong before when I had said I probably wouldn’t go in for surgery too soon. The doctor in Cincinnati showed my recent scans to his surgical team and they want me in during the beginning of January.  Apparently they think that the sorafinib will fail in a few months, before it has a chance to get rid of the tumors, and I agree that is the most likely scenario.  So basically if I do surgery now they will leave little bits of tumor, because they just aren’t good enough to get all the cells, so I need a medicine that can kill the remaining little bits. Right now my sorafinib is effective, and it shouldn’t lose effectiveness during the period when I am off it (the tumor shouldn’t evolve immunity to it if it’s not present). So I’m probably going to stop the drugs for 2 weeks (the absolute minimum of time off sorafinib before surgery), go in for surgery, then restart the drugs a month later (the minimum time after surgery). This isn’t 100% set in stone, I still need to talk with a few more doctors, but it’s the likely plan.

The surgery itself would take out basically all my tumors of note, I’d have my stomach re-opened and they would either cut open the middle of my chest, or they’ll go into my chest from the side to get the tumors which apparently are mostly on the right side. It’s unclear if this will be one or two surgeries, and how long a recovery I’ll have between them if it is two surgeries. The doctor says that it should be a very safe set of procedures but frankly I’m freaking out a bit since  they want to remove a lot of flesh and I can’t help but think that it sounds dangerous. On the other hand while I am very disturbed by the idea (since it involves the chance of eminent death) my long term survival rates would be greatly boosted. I also don’t enjoy the fact they want it to occur like within a few days of my birthday, but that’s just bad luck with the scheduling. But yeah, if everything goes as currently expected I’ll get surgery January; if things go really well I might even be back in school within like a few months (well like 6 maybe, since that’s how long it takes people who DO get fixed by their drugs after surgery with a lot of cancers).

Also, mentioning school, I’m dropping by AZ for a few days while on my way to buffalo. I might not be going to the school itself a ton, since it’s like finals time, but I may drop by.

Oh and we did move into a new house up here; convenient since one of the reasons Katie got this specific one was that it will be convenient for us during my phase of being rather messed up from surgery.

Shrinkage! (the good kind)

Hey all, so I have some good news. I just got my scan results back and I have had tumor shrinkage. Now if you remember I had thought that my cancer had no growth when I last wrote my blog. Apparently that wasn’t quite true, it had grown a good deal. I wasn’t actually told this however until just today. Anyway that growth has been undone, actually all the growth in the last 6 months has been undone and then some. My tumor is now 12.3% smaller than when I started the study in June. That means it is shrinking about as fast as it was originally growing when off the meds, and it was an aggressive cancer.  Now the likely cause of this sudden change is my increased dosage of sorafinib, that was the real difference these past 2 months. Also as I said before I was responding better on my half dose of sorafinib than the patients on the no sorafinib study, this is made dramatically more clear now as they apparently are not doing that well. And if you are wondering, with the way the FDA works no they will likely not be allowed to swap to my study. I was honestly a bit surprised they revised the protocol to let me try a higher dosage however so maybe they will. Also the side effects of the sorafinib are actually rather easy to cope with. They have a record of being very harsh, but I’m young and my kidneys and liver work well, even with the cancer, and I had time to adjust to a half dose, so my side effects are rather mild. There are some issues with nausea and general digestion, my face has an odd skin rash going on, my scalp, tongue, and heels often hurt, and my gums are susceptible to bleeding when brushing and the like. All in all it’s very minor, and honestly I like the side effects because side effects show you have reached a strong dosage. My system is clearly saturated.

Now in terms of future plans I should clarify we are not likely to rush off for surgery any time soon. I didn’t have time to discuss anything in this paragraph with a doctor yet, since we got the results after leaving buffalo, but here’s my thoughts. Firstly I am likely to bleed like crazy if I were to go under the knife with sorafinib in me, so they wont touch me outside an emergency for 1 month after stopping my meds. This means even if I could be operated on now we would want enough extra room to support a one month window of return tumor growth. Secondly my meds are currently kicking ass. I really don’t think that speed of shrinking was expected when it was recommended I later try surgery. Assuming there is not a decrease in speed as the tumor shrinks I could possibly kill it entirely in several months if that rate is maintained. And honestly with the way the meds work with less tumor I think the process may speed up, as less tumor means more medication to go around. I will still very likely need a kidney, and maybe some lymphnodes removed by the end of this but there is some small chance of my meds actually killing it all.  Cancers do evolve rather quickly so there’s no telling for sure, but hopefully a fast enough blitz with two agents will do a lot.

I also have been feeling better lately. I’ve just recently dropped my pain meds from 20mg to 10mg and I haven’t needed many vicodin at all. That is really making a difference on my mental state. The prominent example of which is that I have insomnia. All my life I had insomnia because I just can’t stop thinking and go to sleep. When on 20mg I go to sleep right away, now I am really getting behind on my sleep. It’s actually kind of nice to have the insomnia back; two nights ago I was up late thinking about how to redesign the penal system, and while I suspect I’m still a little impaired mentally it’s nice to be thinking the random thoughts again.  My appetite is doing well too, I’m not really gaining weight but I am also not vomiting or feeling nearly as bad by eating the same amount.

We also did a lot since I last updated the blog. Primarily we went to London, Dublin, and Amsterdam for a total of two weeks (I’ll be a bit brief since we did a lot). In London we went to the tower or London and I got to fire a midevil British version of a ballista (a giant crossbow). We checked out a few musicals (Stomp and Avenue Q). We went to a club, as that’s a very popular thing there and I have only gone to one before (and that was in Japan). And did various other touristy things like go to a pub, saw the rebuilt Globe theatre, went to big ben, and various other things. My main takeaway however is that I would die in London as the food, even like the Italian food, is all just terrible. I’ve always had rather keen tastebuds and upon combining that with my stomach problems I lost a few pounds there. Who the hell makes bitter pastries, and how is blackcurrant the most popular flavor of Gatorade? It just makes no sense to me, I had to go to the local supermarket to get food I could actually stomach.

Ireland was cool, we didn’t really do all that much there, but it’s the kind of place where I could feel at home living I think. We stayed a night there in a converted castle. We saw the book of the Kells. We went on a musical pub crawl. We also went to the guiness factory (reputed to have the perfect glass of guiness due to there being an issue with the tap needing to be specially built) and I had the only glass of beer I have ever found palatable (due to my tastebuds the only other alcohol I have found that I can drink without a lot of syrup in it is Tantakatan in Japan by the way). It was rather amazing actually that the beer from their special tap was totally drinkable but the beer from a normal tap in the same building was disgusting in my opinion.  They also had extremely good lamb stew. But yeah, in general Ireland was the best place along the trip.

As for Amsterdam the primary purpose of that was for me to get high, since its easy in Washington to get medical pot when you have cancer. I got high twice. Once from a brownie and once from a combination bong, joint, and piece of bread with an absurd amount of pot in it. I learned bongs and joints are definitely not my things, but I can do the food, and it really does kill all nausea. If I’m high I stop eating due to stomach pain from being too full, not nausea; but I actually don’t really like the experience. My eyes feel screwed up the whole time and I’m still lucid enough to tell that I’m not as in control as I like. I definitely have some mental changes, like I lose some of my germophobia, I actually smoked a joint that a random café owner rolled and licked closed for me- something I would never normally do as that’s just gross. I also don’t trust myself at all, I know that if I was given a task like “take your pills in two minutes” my attention would break before the deadline and I’d never get the task done. As such I mostly sat in bed reading and eating while high. I did make sure however that my full last day there I didn’t get high so  I could see the city. I very nearly literally saw it all. I walked across the whole thing. It’s tiny. Among the highlights however I saw a cool church, an awesome rebuilt cargo ship from the days of pirates, and went to a carnival and won lots of prizes for Lizzy. The red light district wasn’t as cool as was hoped for, also apparently it’s going to be changed in a year or so to just be a normal shopping area. Also as a side note the Amsterdam equivalent to a donut is delicious.

Oh and as a wonderful souviner we all got sick a few days before our trip ended, and I mean all of us, even the baby. The baby was pretty bad off, needing an inhaler and the like for about a week after we returned, but she’s fine now. I took a long time to recover myself and it carried a nasty stomach bit that virtually stopped my eating for a couple days. I lost like seven pounds in a week, but luckily have mostly regained the weight. That’s about it. Attached is a graph of my cancer growth/shrinkage.