TV and Travel

The days since my last post have either been very slow, boring, and painful or hectic and crazy.  The former were due to severe pelvic pain and constipation where my mobility was greatly reduced and I was essentially restrained to my apartment for most of the day.  Both have been largely resolved with more and better medication.  It's been pretty bizarre how these things pop up since if it's not one side effect then another shows up.  For instance, I started out having terrible back pain which carried on for months, but it hasn't bothered me much at all for a few months now.  The differences from day to day or even morning to night can be huge too.  Nausea, appetite, pain, mobility, bowel function...it's all a crap shoot.  

The hectic days were when I was bouncing around the hospital.  The hospital visits were instigated by my pain leading to a variety of tests/scans.  I had a PET and MRI to see if my cancer was progressing more rapidly than expected.  Some spots were stable, but others were growing fairly rapidly.  The metastatic tumors in my lower lung are still on the small side, but they got substantially bigger.  The MRI showed that the majority of my pelvic bone marrow has been replaced by cancer except for the region where I got radiated.  The docs figured the pressure caused by the cancer was causing my pain.  They put me on fentanyl patches and gave me an epidural steriod injection which has been helping considerably with the pain.  

The strangest day is when I got contacted by a CNN producer around noon and ended up being interviewed by Piers Morgan later that night.  One of my college friends, Amanda Yanchury, tweeted about how the NIH wasn't able to take any more clinical trial patients and specifically referenced me.  Somehow, the producer came across her tweet in the social media universe and decided I would be a good story to tell.  After a lengthy and emotional phone interview, I wasn't sure if I could be coherent on TV and make it through the interview.  I was convinced to go on the show after thinking about it a lot and the support of Anna, Van Tine, and several others.  The interview was a lot easier and shorter than expected, and I'm very happy that Dr. Van Tine was there with me to help answer questions and take some of the pressure off me.  Hopefully my interview helped put a face on some of consequences of the shutdown and help other patients out there like me.  I wish that they can be as fortunate as me in getting into their proposed clinical trials.  (it's baffling and repulsive how the bullshit of national politics can affect the life and death decisions between doctors and their patients).  

But luckily enough, I was somehow able to get into my trial anyway in the face of this obstacle.  This is almost exclusively due to the hard and tireless work of Dr. Van Tine.  I'm not sure how he works his magic, but I suspect he might have a little elf in his family tree.  I was talking to him today to make sure everything is set for me to head out, and we decided that it was about meant to be.  For instance, on Friday I was supposed to get a shot to start the process of bone marrow collection.  However, it accidentally got canceled along with the chemo dose, so I had to wait an hour for the confusion to be figured out and the drug to be brought up.  The bone marrow transplant plan got tossed to the curb once Brian texted me to say "NIH on the phone, don't get shot".  This was about 5 minutes before the nurses brought me back to get the shot which would have prevented me from starting the trial this week.  More importantly, I am thankful for Brian's foresight to start the process of getting me started paperwork wise in the trial over a month ago.  

Anna and I are flying out tomorrow morning for D.C. en route to the NIH in Bethesda.  I will get a variety of tests and scans on Thursday, and I believe I will start treatment on Friday.  Treatment consists of an IV drip into my port of the experimental drug which has been shown to indirectly but effectively inhibiting the mutated protein driving my cancer.  Treatment will be for 6 hours at a time over 7 days which is pretty similar to my previous treatments.  However, I'm told the side effects associated with this drug are pretty minimal so I should be feeling pretty good while I'm there.  I'll be staying at the Children's Inn Wednesday and Thursday nights which is essentially a free cancer kid motel.  From then on, I'll be an inpatient and will be staying/eating/etc in the hospital.  The trip has been made a lot less worriesome by CJ's Journey who set us up with plane tickets and a generous supply of travel funds today.  Brian thinks that I should start feeling a difference in the first month on whether the trial is working for me or not.  I'm feeling really good today (at least compared to the past two weeks) so hopefully this starts a streak that the trial keeps going.

Options A+B=Plan 4

I had scans last Friday and met with Van Tine on Wednesday to go over them.  It looked like my tumors didn't respond to the last two rounds of chemo since they stayed roughly the same size.  Even worse was that I have new tumors popping up in my lung.  It was hard to tell what was going on in my pelvic tumors since I recently had the shot which stimulates my bone marrow to churn out new cells to replace the ones that the previous round of chemo killed off.  The conclusion was "chemo is not working, your cancer isn't playing by the normal rules, your chances of a cure are greatly reduced, we're going to try something new, don't panic yet".

The new plan is to start the bone marrow transplant process by collecting my bone marrow stem cells and head to D.C. for the clinical trial.  I'll start getting shots to stimulate my stem cells to ramp up production starting next Friday with a shot everyday until Monday.  I'll get an additional shot on Monday so that the bone stem cells get released into my blood.  Then, starting on Tuesday, they will start collecting my stem cells through a catheter that will be implanted the preceding Friday.  They will sort the stem cells out in a continuous process that will run my outgoing blood through a machine which will pick out and keep the stem cells.  Then the rest of my blood will get pumped back into me in a process that will likely take several days.  The marrow transplant docs will save away my stem cells until everyone decides its the right time to do the high dose chemo regimen and following transplant back into me.  As it turns out, the chemo regimen is different than the one I've been getting before and seems to only be used in conjunction with a bone marrow transplant.  

The clinical trial process will begin soon as well, but it remains to be seen whether I will be officially accepted into it or not.  First, (I think) I have to fly out there for an initial consulation to make sure I am a good candidate for the trial.  From what I've gathered, I will be out there for two days for their doctors to look me up and down.  The NIH will pay for my travel and arrangements if I get accepted to the trial, and a local sarcoma charity (CJ's Journey) is paying for my first trip out.  CJ's Journey is also paying for Anna to come out there with me which is a good thing for both our sakes.  It remains to be seen when all of this will happen since Van Tine is currently trying to orchestrate between the NIH, the bone marrow team, and radiation oncology (to keep my cancer under control) to figure out who will have me when.  

On a seperate note, I want to make a pitch for scientific research.  I've been thinking of doing this for awhile, but I think this is the right time since Van Tine officially declared me an experiment due to my cancer not playing by the currently known rules.  Please support science any way you can politically, financially, socially, etc.  It's by no means perfect, but it drives advances in health care, technology, the economy, and improvements in our basic way of life.  To be more specific, I want to make a pitch for CJ's Journey in support of their support of me.  All they needed to know was that I needed a flight to D.C. for this trial to send me an email the following day saying the will pay for everything.  All I need to do is figure out the costs and they will mail me a Visa card to cover the costs.  I've been to one of their events previously, and got to meet the hard working and generous people who put together and run this small, but impactful local charity.  I know they've paid for significant others to fly out with the patients before, but I was pleasantly suprised and very grateful to read in the email that they would cover Anna's expenses too without me having to ask.  CJ's Journey also directly supports Van Tine's research and clinical trials of sarcoma as well making it a very well rounded charity to support.  If you want to check them out or make a donation, you can find them at http://www.cjsjourney.org/.

More chemo for now with a couple of options in sight

I am about to finish the last day of my second chemo round with the new formulation.  This round has been the best so far with minimal side effects.  I'm more tired than usual and chemo taste has started to come on a bit.  However, I haven't had much of any nausea or vomiting since I started treatment on Monday.  My recurring pelvic pain has also subsided as well which I'm all attributing to the re-addition of steroids to my chemo pretreatment.  The actual time spent in treatment has been going pretty quickly since I have regained my previous undergrad ability to sleep on command.  I literally sit in the chair, mess around on my iPad a bit until they hook me up, and am essentially asleep until they tell me that I'm done.  I think I had my mouth open half the time and made occasional noises today as I took my 3 hr nap.  I don't think anyone else in the pod minded though.

My meeting last week with Dr. Abboud, the bone marrow transplant doc, was interesting.  I learned a lot about how the process would happen if it will happen.  I also learned I have to jump through a lot of hoops before we get close to taking out any of my blood stem cells.  This initial meeting was necessary not just for me, but to get the ball rolling with the insurance company.  Also, I had to get my sister's info to them so they can be tested to see if they could donate to me in the very unlikely chance I would need it.  This would most likely be the case if I developed a secondary blood cancer (like a leukemia).  Besides the paperwork, I need to get a bunch of various tests to see how good of condition I am in to undergo the whole procedure.  Then they would take out my stem cells through a blood sorting machine after injecting me with drugs so that I overproduce the stem cells and release them from the marrow into my blood stem.  The collection and sorting would take place over several hours and possibly over several days.  At some point down the line, days to weeks later, I would get the high dose chemo over a week, have the saved stem cells injected back into me, and recover in the hospital for a few weeks until I'm able to return to the germ infested world.  

Another option that is on the line is a NIH clinical trial that is going on in Washington D.C.  Some researchers, performing biomedical research kinda like me (only their work came out with something more clinically useful than anything I will produce), discovered a molecule which can bind to a RNA helicase to disrupt it from interacting with the mutated protein that drives my cancer.  Basically, the drug has been shown to prevent the cancer from growing.  There have only been a few papers about the drug so far, but appears fairly promising from what I have read.  And the good news is that I have the right genetic mutation to make me eligible for the trial, and my paperwork is proceeding in case Van Tine thinks that's the best route for me.  If that happens, it appears that I will be flying to D.C. for a week every few weeks for treatment.  But that is a long ways off down a distant and perhaps possible yellow brick road.  I would greatly prefer if my current treatment would work well since being on a clinical trial is never a good thing since that means the regular ways to deal with the disease aren't working, no one knows whether the trial drug will work, and you're not sure whether you are actually getting the trial drug or the placebo.  

What will happen in the immediate future are bone marrow related tests, more meetings with the docs, upcoming scans, and more chemo in three weeks.  

A week off

I was discharged from the hospital last Tuesday and have been slowly getting back to normal since then.  Nausea was the first to go, and I've been regaining my appetite a little with each day.  To balance that out, I've now lost the ability to stay awake much past 9 pm and my morning pelvic pain is returning.  The nice thing is that I feel fine from about 10 am to 6 pm.  It's been great being able to relax and work regular days without having to stop by the hospital for any reason.  However, that streak ends tomorrow with my appointment with Dr. Abboud, the newest member of the medical team.  He specializes in bone marrow transplants, and I will be meeting with him to discuss my possible self donation and transplant that I've talked about in previous posts.  Then I have a regular appt to check my blood counts on Thursday with my next round of chemo starting on Monday.  Hopefully things keep looking up and forward with the current plan.

neutropenic fever

I finished my last round of chemo two Fridays ago, and I expected to start feeling back to normal fairly soon last week as has been my previous experience.  However, I didn't feel better and instead starting having this weird tightness in my left chest.  Van Tine sent me in for an X-ray followed up by a CT.  I met with him on Wednesday about the results and looked like I had some kind of infection.  I was mostly feeling ok so he gave me some antibiotics.  I spent most of the rest of the day napping in lab since we had lab meeting that afternoon for the first time in over a month and I was already on campus.  I was feeling kinda off and warm after I got home which lead to me taking my temp to discover I was at 101.7.  After talking to Van Tine, going to the Cancer Care Clinic, and getting a blood count taken; I was admitted with nuetrapenic fever.

Nuetrapenic fever is the medical way of saying I didn't have any of a certain type of white blood cell with a fever on top.  There are many potential causes to this condition, but mine was almost certainly chemo.  The docs admitted me since not having any white blood cells makes you extremely susceptible to infection.  This is why I was started on high doses of very broad spectrum antibiotics and put in isolation.  Although this is a fairly scary condition to be in, Van Tine was happy to hear it since it meant all the tiny nodules he saw on my lung really was an infection and not my cancer going bonkers.  

I have essentially been in the same condition since with a few exceptions.  My left chest pain is mostly gone, but I quickly lost whatever appetite I gained over the weekend and started vomiting regularly.  The frequent nausea has kept be in bed most of the time especially since exhorting myself is often the instigator behind vomiting.  Just the walk to the bathroom and back made me out of breath.  This has improved quite a bit in the last couple of days after I've received a few units of red blood cells and platelets which I was low on too.  My body temperature has been a daily roller coaster of ups and downs which hasn't helped either.

I haven't been bored much since I've been here.  I've had lots of friends come by and visit.  Many a nap has been taken to make up for fever induced sleepless nights and getting woken up by nurses to take vitals.  A mix of random cable TV movies, shows, and some reading has filled up the rest of my time.  The food has been a mix ranging from pretty good to terrible.  It has been a learning experience.

I saw Van Tine today with good news.  He said my blood counts were climbing and if things went well I would be out on Tuesday.  I would need to keep my temp at normal and have my white blood counts keep rising for this to happen.  Otherwise, they would assume the stream of antibiotics I've been getting haven't been effective and they would start some new tests to figure out what kind of infection I have.  Van Tine said it was pneumonia when I was first admitted on Wednesday, but after reading Wikipedia it appears pneumonia is the generic term for lung infection.  Hopefully it gets cleared up before we'd have to worry about that. 

Chemo Attempt Number 2

As you might have seen on Facebook, the docs decided from my scans that more chemo is the next best step.  This is because my progress through radiation had both good and bad consequences.  The good is my primary chest tumor shrank considerably and will likely continue to do so as a result of radiation's continuing effects.  The bad news is the cancer advanced in the fissure between the two lower lobes of my right lung and the metastasis tumors in my pelvis that appeared to be gone in the previous PET have returned.  Van Tine is optimistic that the new cocktail of chemo drugs will be effective, which we will determine in 6 weeks with a fresh set of scans following 2 rounds of week long treatment.  If it appears to be doing the trick, I'll donate my bone marrow into storage and get a high dose chemo regimen which will kill off hopefully a great deal of cancer but take my remaining bone marrow and immune system with it.  After the chemo wears off, I'll get my stored marrow transplanted back into me.  The kicker is I'll be stuck in the hospital for a month or so during this process if it all happens as planned.  Plans never seem to reach completion (currently on plan 3.5) since I've started this journey in March, so who knows what will actually happen.

So far I've had 3 days of the new chemo this week with two more to go.  I started having some nausea and dry heaving today which was great on top of the return of chemo taste and what feels like a sinus headache.  One nice thing about the new chemo drugs is that it only takes three hours instead of six to pump them into me.  I've also been able to sleep through two out of three treatments which has helped speed things along.  Being back in treatment has also eliminated the severe hip pain I was having last week..  The docs told me to double down on the pain meds at night since it was the nights and mornings that were the worst with the pain subsiding during the day.  That greatly helped in combo with remembering to take my Ambien.  However, the relief caused by chemo with the assistance of IV steroids really did the trick to eliminate my limp.  Actually it's probably the other way around since roids work much quicker than the chemo, but I can pretend that the regrown pelvic tumors causing such pain have retreated a little due to treatment.  

In other news, lab work continues in a broken, piecemeal, and forever behind manner.  It's hard to accomplish much when you're trying to work half the morning and half the afternoon with chemo induced confusion and forgetfulness screwing with you.  But it does appear that I need to organize my messy batch of data into something intelligible to show my boss when he gets back from Colorado.  I managed to get out of a meeting halfway through it last week by throwing up into not one but two different lab trash cans.  Not the most pleasant way to bail, but very effective.  I did make him very happy when I was accepted to the Cancer Biology Pathway here.  WashU has various of these programs, and during it I'll take a couple of classes about cancer while shadowing some of the cancer docs as they treat patients and such.  A cancer patient observing doctors treating cancer patients.  It'll be like looking into some kind of twilight zone looking glass.  And one of the reasons my boss is happy is that he won't have to pay my salary for another two years.

Also, a car load of my high school friends are driving down this weekend to see how I'm doing and check out St. Louis.  It should be a lot of fun taking them around and hearing some new stories.  One of the silver linings of cancer has been getting caught up with friends I haven't seen in awhile and really understanding how many people I am connected to both directly and indirectly.  It's definitely been interesting.

First publication, first hospital admission

Today has been an unusual day.  I started out with a PET scan at 7:30 this morning with a 11:30 CT scan following.  The combination of heading in much earlier than usual and no breakfast (because of the scans) threw me off a little from the start.  I've been having increased pelvic pain in the mornings which wasn't helping things either.  The PET went fairly quickly with the anticipated hour wait time in between the radioactive glucose injection and the actual scan being taken up with an episode of Breaking Bad.  The wait for the CT was long and unexpected, but I got a number of cat naps in.  About 30 mins after the scan I got a call from Van Tine's nurse saying the radiologist saw that I have an obstructed small bowel and that I need to be admitted.  Turns out it wasn't an emergency by any stretch since I was told to come back around 5pm to check in and the only treatment I've gotten so far (9pm) is a fluid drip.

I appear to be an unusual case of obstructed bowel since I'm not hunched over in pain and abdominal cramps.  I feel fine for the most part, but my appetite and regularity has been hit and miss lately.  The plan seems to be observation over night with another CT in the morning to see if the obstruction is still there.  I emailed Van Tine to see what he thought and he is confident that 'conservative treatment will cause the obstruction to regress'.  I guess we'll wait and see what happens.

A glimmer of excitement brightened my day when we got an email from one of our collaborators that the paper I worked on got accepted to the journal Cell.  The work that I contributed to the paper was a side project which turned out to have novel results which complemented the work that this other group was putting together.  They were way ahead of us data and results wise, so it made sense to combine efforts than try to get separate papers.  Several months and only one revision proved that it was very mutually beneficial arrangement.  Luck was definitely on my side on this one.  Hopefully my primary project will pan out too, but it's going to take a lot more work before that potential publication sees the light of day.