Rollar Coaster Continues

This past week has been great.  Went to work everyday, and was able to stay there for the regular hours.  I caught up on my mouse colony organization for the most part, started a new experiment, and got to spend a lot of time hanging out with my friends after work.  I was relatively pain free, close to a regular appetite, and no nauea to speak of.  I was even able to stay up to 12:30 on Saturday night for Halloween which is the latest I've been up in months.  Granted, Danny had me going on Coke and coffee when I was starting to fall asleep at his place around 9, but I recovered and made it through.  My costume wasn't as great as last year, but Anna and I made a pretty good Don and Megan Draper after we told people who we were.

All of this came crashing down on Sunday morning.  I was starting to get progressively more stiff in the mornings starting on Thursday, but the hammer really dropped after I peaked Saturday night.  My pelvic pain came back with a vengenance, and I was essentially bedridden all of Sunday.  I doubled my steriods and methadone after consulting Van Tine, but that didn't have much of any effect.  I went into the cancer care clinic on Monday and received a few doses of IV pain killers which helped quite a bit and allowed me to get up and go much easier.  I got a good night's sleep and thought I might be in the clear.  However, this was not the case since I spent most of last night in misery. I got a little sleep in, but not much. Spent most of the night just laying in pain or watching Sons of Anarchy trying to ignore it.  I've been in the clinic again all day today getting regular doses of IV meds.  Just got done with an MRI set to my lower back, and will be finishing up on my pelvis tomorrow. Would have done it all at once, but the pain was too much for that long of a time on that table. I should be officially admitted and moved to my new room anytime now. Hopefully the scans will point to some kind of remedy for my pain so that I can go back to my usual pain management schedule.  Until then, feel free to drop in or give me a call.  

An upswing

I started treatment again this week, and it appears to be doing some good.  There have been several changes and additions to my medication and treatment course so it is hard to say exactly what is working and what is not.  The bottom line is I was in constant and dibilitating pain last week, and now things are looking a little up with a lot less pain.  I hope that this upswing in the way I feel continues and translates into scans of shrinking tumors the next time I get imaged, but this could turn sour just as fast as it has before too.  I'm just happy I can bend down to tie my shoes again and be able to get in and out of bed/chairs/cars without the multistep, piercingly painful process.  

The thing that I'm the most grateful for in my very recent improvement over the last few days is my ability to eat.  I've had constant nausea and no hunger for the past three weeks or so, and have been eating small bowls of cheerio's more than anything else.  I lost a good ten pounds or so from where I was during this process, and can't afford to lose much more by my counting.  Over the past couple of days, I've been able to eat larger portions of regular food and even enjoyed most of a steak sandwich for lunch.  Not being to eat, not wanting to eat, even though you know you need to eat is harder and more painful than someone would ever guess.

The changes to my treatment leading to these improvements include radiation, chemo, new pain killers, and new anti-nausea meds.  The radiation consisted of single high power hits to the large tumor on my head and a spot on my left side that's been pretty painful.  The worst part of radiation was the preparation where they made a mask of my face from a formable plastic mesh which took about 15 minutes to harden while completely enclosing my face preventing me from opening my eyes and restricting my breathing.  This all took place on an extremely uncomfortable posiition on a flat table for the CT machine.  The actual radiation didn't take that long, and I had them cut out holes for my mouth and nose.  It's hard to tell whether it is the radiation or chemo working, but my head tumor has already amazingly shrunk in size from a large goose egg to a small bump.  It remains to be seen whether the outer results match what is going on in the inner half of the tumor (as seen from the MRI).  

The chemo regimen they put me on consisted of two new drugs and one that I've had before.  The two new ones came as a pill and as a fluid to be drank with grape juice (why grape juice I have no idea).  It was simplier having treatment in this form than muliti-hour IV, but it made my nausea considerably worse, so we transitioned back to IV for my last dose on Thursday.  I greatly preferred the IV route and was able to get a decent lunch and nap in which did wonders.  

The next step coming up is scans and more chemo in a couple of weeks.  But as we know, something will probably come up to upset that established order.  I'm just hoping that I will be ok to get back to some normalcy in the short term and be able to keep my mobility up for the coming holidays.  Until then, I'm going to enjoy the company of my family and friends the best I can while I deal with the bullshit that is cancer.  

   

MRI of head tumor

There and back again

Once again, my treatment plan has dramatically changed.  I was supposed to start treatment with an experimental drug on Friday after going through a short series of tests.  Tests which have been done before at WashU only a short time before heading over to the NIH.  The first red flag to pop up was the levels of a certain liver enzyme that they test for in my blood work.  The levels were perfectly normal over a few days before hand, but were consistently twice as high (possibly indicating liver damage) after 3 blood draws at the NIH over two days.  The scans didn't show any liver damage, I haven't had a drink in over a month, and there is no reason for the levels to spike out of no where so this was truly bizarre.  However, the blood tests weren't nearly as concerning as the "haze" found on my head CT here.  The clinical trial protocol states a patient can't start the trial if they have an untreated brain tumor which the NIH docs that this haze might be.  Although the MRI the next morning proved that the haze was just nothing, it was a very scary 24 hours waiting to find out.  

Even though I don't have any tumors in my brain, it turns out I have several in my skull hitting up against the membrane (dura) that surrounds my brain.  I've had a bump on the back of my head for awhile that got bigger and smaller without the docs really knowing for sure whether it was a tumor or from some kind of injury.  At first I thought for sure it was from the cast I had to lay in for radiation, but the longer it latest, the more confident we were that it was a tumor.  It has been getting substantially bigger and more sensitive recently, and they were thinking about radiating.  That got put off once the clinical trial plans started building up since I can't be undergoing radiation while in the trial.  The MRI showed that the tumor was worse than it appeared in the other scans with it reaching from the dura to the skin.  This makes them worried it could break through the skin which would be bad for I'm guessing many reasons although the NIH docs didn't specify.  They also believe this big head tumor seeded the four others growing on the inside of my skull.  My other tumors throughout my body have been growing fairly rapidly lately as well making the overall state very concerning.  So after several NIH docs combined with my regular docs talked it over, they decided the best course for me is to return to St. Louis for combined radiation and chemo.

Although it is disappointing, I agree that this is the safest route.  My cancer has responded fairly well to radiation during my first round of treatment.  The chemo regimen that I will be put on has been tested and has a pretty good success rate as a second line treatment as well.  On the other hand, only 6 or so people have been treated for only a short time with the experimental trial drug.  For all we know, it might not have any effect on me which I can't afford right now with the rate my tumors are advancing.  Also, the NIH docs will be amending the trial protocol so that I will be able to start the trial when my tumors are in a more stable state.  I'm guessing this would be a few months down the line at best.  And even though I never started treatment, I am somehow still a part of the trial and will have any subsequent travel to D.C. paid for by the NIH.  Overall, it was beneficial for me to make the trip since we learned more about the current state of my disease, have a few more experts in my corner to advise on my treatment, and was able to have a bit of fun over here as well.  

The fun Anna and I had consisted of fairly short intervals in between time spent at the hospital.  We were able to have dinner with Anna's cousin Sasha on Friday night, and then we had lunch with my friend Maria from college before we flew out on Saturday.  Although I wasn't able to eat much due to my poor appetite and general gut ache, it was great conversation and a welcome break from cancer related activities.  We were also able to go to an art museum in D.C. on Wednesday which was nice.  The overall few combined hours of these activities saved Anna's and my sanity for the trip.

There were several frustrating things about the trip.  First of all, we are definitely not used to having to deal with security.  Once we got our permanent passes it wasn't too bad, but being questioned about our coming and going in and our of the NIH campus was board line ridiculous.  The cab company we had to depend on to get around was awful.  The wait averaged 30 minutes and the drivers didn't listen or know where they were going half the time.  And even though it was great being able to stay at the Children's Inn at the NIH for free, we felt very out of place in the midst of everyone else who consisted of very young families. 

By far the hardest part has been my declining mobility and increasing pain.  It is a constant challenge to get in and out of bed, chairs, and cars.  Unless I'm in the several peak hours of pain meds, I am unable to pick things off the floor without my lower back erupting in pain.  I am essentially in a constant degree of pain which is the worst at night and in the morning.  Laying down is about the only relief I get unless I load up on the pain meds and am in the 4 hour or so window to peak drug activity.  Then I'm able to walk and move around close to normal.  A few doses of IV pain meds this afternoon combined with the sleep they induced/enabled really helped me out today.  I will be starting methadone tomorrow which based on what I've read will better control my pain over longer periods of time.  Even better would be if the treatment I'll start getting on Monday will be effective and reduce my pain like it has in the past.  Treatment time will be short since the one chemo drug is a short injection and the other two are oral pills.  I'll be having radiation at the same time which I should be getting mapped out for tomorrow.  Hopefully this will be the plan that finally sticks.  

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.