Monday, December 2, 2013

A final thought



It is with a heavy heart that I write this last blog post in honor of Greg. He has bravely battled Ewing’s Sarcoma since February. This past Friday, November 29, his breathing became labored and he finally realized we needed to go to the ER. We called the paramedics and Greg was transported to the hospital and was switched from his nasal oxygen to a full mask. After X-rays, the doctors determined there was quite a bit of fluid in his lungs and he underwent a risky procedure to drain some of the fluid. To our dismay, after 1.5 liters of fluid were removed his lungs refilled. At this point it became clear he needed to be admitted to the hospital. As always, his doctor Brian Van Tine pulled some strings and made sure we got a good room with the best nurses to help us through this time and keep Greg as comfortable as possible. 

Once admitted, Greg was put on a CPAP to ensure his blood oxygen levels were sufficient. However, the mask was cumbersome and claustrophobic. It gave Greg a dry mouth which could be remedied with sips of cold water. However, taking a drink was quite an anxiety inducing process since it required removal of the CPAP mask. As his condition worsened, Greg got increasingly anxious with the mask. There were several scary incidents where Greg speedily removed the mask and was left gasping for air. 

On Saturday, mountains were moved and after a stressful, anxiety and pain filled morning, a catheter was put in to remove the fluid. This provided some relief, but not to the extent we were hoping. In the early hours of Sunday morning, Greg made it clear he was ready to be switched to a comfort care plan. All antibiotics and blood products were stopped. Instead, the focus is now on keeping Greg as comfortable as possible in these last few days. Brian spent quite a bit of time making sure he was comfortable and calm and helped switch him from the CPAP to a much more comfortable oxygen mask. 

We have been blessed to have wonderful support and company from Greg’s family and friends. All of Greg’s sisters and their families were here for the holiday. His aunts and uncles Julie, Clayton, Barb and Gary all came down as well. Barb and Gary’s children also joined them.  Additionally, the nurses we have had helping us out have been phenomenal – in particular Lisa and Kathy. Day and night they have been hard at work making Greg and all of use comfortable. 

I feel honored to be a part of his life. He changed every person’s life who he met. His attitude about everything was truly awe-inspiring. Never one to complain, many people didn’t realize the severity of his cancer or the intensity of his pain. Even as he suffered, he continued to help all of us deal with the feelings we had. He was a constant source of calm which spread to everyone in his presence. He was loved by many, a true testament to his amazing personality. I will miss him forever; he has a special place in my heart and in my soul. I know I am a better person having known him.

-Anna-

Tuesday, November 26, 2013

Slow but steady decline

There hasn't been many dramatic changes in my condition since my last blog post.  I've been slowly losing sensation in my lower body starting with my toes and moving its way up my abdomen and back.  At least now I do not feel any pain in my legs at all.  The scary thing is I don't feel anything in my legs at all.  The scariest thing is the slow but pursistant advancement of the numbnexs up my body.  

There was a small flurry of activity the last few days.  I've been having bloody noses which concerned the home health care nurse who checks in on me.  They did a blood count on me and found I was very low on platelets and red blood cells.  This lead to a ride to the hospital on Friday to recieve 2 units of platelets and 4 units of bed blood cells.  I didn't feel much different, but I was told my cheeks regained their normal nosy glow.  It took most of the day for the blood products to slowly drip into me, but the time flew by thanks to a nap in the morning and lots of company in the afternoon.  A few different carfulls of friends came down, some expected and some surprise, to visit and see how I am doing.  It was great seeing them all, playing cards against humanity, and catching up in general.  

Monday was also very busy.  I finally got physical therapy to come out after a week of calling around to various people.  It was very productive evaluation, and my physical therapist seems like he will be a big help.  He ordered a mechanical hoyer lift to get me out of bed, a recliner wheelchair so that my back will be ok, and a wheelchair pad so that I won't have to sit on the plain seat.  Surprisingly for all parties, this equipment arrived about 4 hours later in addition to a trapeze bar for my bed and oxygen machines.  The trapeze will hopefully help me adjust myself in bed, but I haven't tried it out much since I've been pretty sore today.  The oxygen machines are for my low O2 levels and has helped a lot with my wakefullness.  

Even more surprising was I was able to use some of this equipment right away.  The oxygen concentrator was ready to go and easy to use which I'm sure helped me be able to use the wheelchair for a bit.  Thankfully, both my regular home health care nurse and a nurse who will be helping me out to give my parents a break were both here at the same time.  We used this opporunity to use the lift with experienced people to train my mom how to get me into the chair.  It was a little more awkward than I would like, but we managed to get me fully upright and sitting for the first time in weeks.  My back and abdomen did not appreciate this transition, and I was extremely sore and rigid for the rest of the night.  I was only up for 20 minutes so this will be something I will have to work on to be able to go anywhere outside of my apartment.  PT comes out tomorrow so that will be a good test to see how I'm progressing.

Next up is more chemo and scans on the 4th to see how I'm doing and treat me with a new cocktail of drugs.  My sisters are coming down for Thanksgiving which will be fun and a good distraction from life. Here's wishing you a happy Thanksgiving too.

Monday, November 18, 2013

Waiting

I have been back in my own apartment since Wednesday without any dramatic changes.  However, things are leaning to a downward progression even after treatment.  It is encouraging that my blood count numbers regarding my liver and bones showed improvement, but my mobility and strength is not showing the same trend.  Overall, being at home is a vast improvement to being in the hospital.  I don't have to deal with a rotation of random nurses and techs (who were largely great with a few exceptions).  My parents have been taking great care of me and are learning how I need to be moved around without too much discomfort.  Being so dependent on others to take of my most basic needs has been hard, but my family has made it that much easier.

My current condition is both better and worse than it was two weeks ago when I got admitted.  My pain is under control after adding some other kinds of pain killers and increasing a couple others.  My legs and lower back flare up periodically, but we have found that we need to keep them moving around in different positions to remedy that pain.  The worst part is that I am essentially paralyzed from the waist down, but still able to feel pain.  I haven't gotten out of bed in over a week, and it is fairly uncertain whether or not I will be able to get in and be mobile in the wheel chair that was delivered today.  I am able to roll side to side with some difficulty and pain, but being able to sit up completely with a straight, unsupported back is a different story.  I am both anxious and scared to try the wheelchair with physical therapy.  Anxious since it would allow me to go from being stuck in bed 24/7, but scared to fail and have that door of hope close on me.  Van Tine already told me that I will probably never walk again, but any form of transport besides a paramedic's gurney would be a vast improvement.  

I have made one trip out of my apartment via ambulance since I was discharged.  This was to complete my latest round of chemo that I mentioned before.  It only consisted of two days actively receiving treatment.  The first dose went fine and without any side effects, but the second dose that I got on Friday was pretty unpleasant.  I have been throwing up all weekend, and my guts have felt like a can of worms wiggling around.  Thankfully, I have felt substantially better since this afternoon.  I've been able to keep my food down and haven't felt nearly as bloated.  Now I just need my throat to heal from the acid burn of puking at least once a day, and the creeping numbness that is advancing up my back and abdomen to stop.  The docs think an enlarged tumor is putting pressure on my spine.  We treated that area immediately with a 5 dose radiation set after discovering it via MRI.  However, I have not felt any relief from either radiation or chemo besides my pain relief, which I'm sure is at least partially due to the new pain meds.  I'm due for another chemo round of the same drugs in two weeks.  It is a fairly experimental regimen, but has worked in another of Van Tine's patients in the past.  Only time will tell whether it will work for me too.  If not, he has other drugs to throw at me, but the number of good options are dwindling as my cancer spreads and gets larger.  

Things are getting scary as all of these changes have happened in such a small amount of time.  When I was admitted this time around, I was in terrible pain, but I was still walking.  When I left, my pain was OK, but I was unable to move my legs at all.  They have also shrunk drastically in size and muscle content in a very short period of time which was surprising to see.  Besides the random bouts of pain, my legs are numb and tingly.  This sensation has been climbing up into my abdomen and lower back.  This has made mobility even worse and been hindering my almost constant GI issues.  Most importantly and scarily, the numbness has made it hard to breath at times.  It's very hard now to see a bright and sunny conclusion to my fight against cancer.  Nothing has worked against all of my tumors, and every treatment seems to only keep the progression at bay for a short amount of time.  I have read about patients who have come back from worse conditions, so there is still hope to be found.  I'm currently in a waiting game to see what will happen next.  While I wait, don't be a stranger.

Saturday, November 9, 2013

Steady decline

 It has been a slow week being after being admitted to the hospital.  Changes have been slow and largely for the worse.  My pain has been stable with low and tolerable amounts of pain laying still on my back.  However, the pain greatly increases whenever I have to roll over or move in general.  As long as the nurses are careful and take things slow it isn't too bad.  It mostly affects my lower back, hip, and thighs.  The strange thing is this area is numb and tingly without much sensation.   The worst thing is I have lost the ability to move anything below my waist.  The cause of my pain and loss of sensation is tumor growth along my spine putting pressure on my nerves.  

We discovered the tumor growth after an MRI on Thursday, and so far the docs have treated it with radiation and chemo.  I was able to start radiation right away, and finished up my fifth and final session on Wednesday.  I haven't felt any effects from radiation so far, but it often takes time for it to shrink the tumor.  Radiation has had mixed results in the past with some areas shrinking and some staying the same.  Hopefully the tumor that they targeted in my lower back is radiation sensitive, and I start to see some results soon.  We are also starting a new chemo regimen today which has previously helped a girl whom Van Tine treated who was in a similiar situation.  It consists of three drugs applied together at a low dose.  Van Tine said they seem to work together better than seperately, and the reason to use a low dose of all three is the regular dose would be too toxic.  I received my first dose last night and will get the second and final dose of the round in a week.

Overall, the week has been scary.  I've been confined to bed, and feel like I've switched places with one of my old nursing home residents.  I need assistance with just about everything due to my current paralysis.  I've been catheterized since the docs thought my adomenal pressure and bloating might be due to urine retention.  The initial catheter placement burned quite a bit, but I got used to it within a day or so.  Waking up to find that I am essentially paralyzed from the waist down was one of the most frightening moments of my life.  Espessially when that was combined with the need to be assisted going to number 2.  The worst part of it is that I can still feel the numbness, tingling, and pain in my lower body since I'm not actually paralyzed. 

My time in the hospital has been much easier to deal with than my previous admissions due to the constant contact with my family and friends.  My mom and dad came down right away, and she has been staying here ever since.  My dad had to go home for the week to finish up with harvest, but he came back down with my little sister Tracy this weekend.  My other siblings along with several aunts and uncles have come down over the past two weekends as well.  My friends have also been great with many impromptu visits.  I've also recieved many cards and messages which have brightened my day.  Thank you to everyone who have made this terrible part of my life a little easier.

It is becoming harder to remain optimistic about a cure at this point.  My cancer had proven to be more aggressive and treatment resistant than the typical Ewing's sarcoma at every treatment point.  New tumors keep popping up with every scan.  The periods of normalcy after treatment are becoming shorter as well.  Van Tine tells me to remain patient and that he has seen his patients come back from worse, but he also says that my current prognosis doesn't look good.  I've decided to take each day one at a time awhile ago which has helped me deal with each crisis as they've popped up.  There isn't much I can do besides take the doctor's advice as new problems come along.  I've remained fairly stable over the past few days, so it is hard to say what will happen next.  Hopefully, the chemo will have av effect, and I will be able to get out of bed on my own for another stretch of freedom.  I'll update soon if something dramatic happens.  Thanks as always to everyone pulling for me out there.

Friday, November 1, 2013

Settled in with mixed improvement

Things are going better for the most part.  I was essentially in agony yesterday with constant pain extending from my pelvis down my legs and into my lower back.  I was pushing my pain med button on the dot every 20 mins since that's when it would be active again.  I had a pair of ice packs resting on each side of my hips almost the entire time with brief intervals of rest when it got too cold.  I was still able to get out of bed (barely) to transfer to a wheelchair for transport to radiation and to my new room.    Today is much better with much less pain laying in bed although I'm not able to get out of bed.  One way they're hoping to make my situation better is radiation.  5 treatments are currently planned for this set, and I am lucky to get started on them so quickly.  I was simulated (prepped) in a CT scanner yesterday morning, got my first treatment that night, and my second treatment this morning right after my pelvic MRI.

The MRI this morning was a lot easier than the one last night due to much less pain and much more sleep last night.  I woke up about every hour or so, but I was sleeping well in between.  The funny thing is my pain laying down in bed is dramatically better and more tolerable, but it is more painful getting out of bed.  Thankfully, I was able to stay laying down all day since they transferred me to scan and treatment in my bed.  They kept the sheets underneath me for the tables as well which made them much more comfortable.  The extra pain killers they gave me before the MRI helped me through the heat and discomfort as well.  My appetite is coming back too.  Especially in contrast to yesterday when I couldn't eat anything due to pain and bloating.

I was able to relax all afternoon after my scan and treatment were finished.  My parents came down yesterday after we told them about my situation, and my sister Lori accompanied by her husband and daughter came down as well, so I've had a nice amount of company while being holed up.  My lab mates, friends, and an unexpected drop in by my cousin Brian and Megan have kept things from getting boring as well.  The only real interruption to resting and talking after my scans was a visit from the physical therapist where we learned I couldn't get out of bed without a painful explosion in my lower body.  This combined with my otherwise lack of mobility will keep me in the hospital for the foreseeable future.

I am starting a new pain management regimen with some different drugs, so hopefully this will help me get out faster.  The radiation should reduce the tumor expansion which is likely causing all the pain.  The MRI results haven't all come in yet, so it's hard to say where my current condition cancer wise is.  Should find out soon, maybe tomorrow when Van Tine comes back from a conference in New York.  Otherwise I'm going to try to enjoy my family being here even through I'm cooped up and can't even leave to go get a meal with them.

Speaking of being cooped up, Anna and I have a pair of tickets to the Beauty and the Beast at the Fox Saturday night.  Orchestra B level and going for $100 total or best offer.  Email me at greg.sibbel@gmail.com if interested.

Wednesday, October 30, 2013

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.  

Saturday, October 19, 2013

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.  

   

Sunday, October 13, 2013

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.  

Tuesday, October 8, 2013

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.

Friday, September 27, 2013

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/.

Thursday, September 12, 2013

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.  

Tuesday, September 3, 2013

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.

Sunday, August 25, 2013

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. 

Wednesday, August 14, 2013

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.

Monday, August 5, 2013

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.

Monday, July 29, 2013

Feeling pretty good

I just got done with my last day of radiation, and it feels pretty good to be done with another leg of my treatment.  It took about 7 weeks to get through at around an hour a day for 5 days a week.  Periodic nausea, increased fatigue, a sore throat for the past three weeks, and what is currently looking like a bad sunburn on my back were the worst parts of radiation.  I was able to work almost full time hours during the whole way, so it was a very manageable part of my treatment so far.  The nausea and lack of appetite appears to be clearing up already over the weekend, and I am hopeful that the sore throat/burnt back heal up shortly as well.  Fatigue is still sticking around, but I managed to drive back and forth to Des Moines over the weekend without much of a problem.  Nor did it prevent me from meeting up with several of my friends and help celebrate my niece's first birthday.  I fell asleep during the present opening, but I don't think she noticed.  The drive home seemed to go by faster than the way up, and a mix of coffee, iced tea, and loud music pulled me through in the last half hour to make it home last night.  

I have CT and PET scans lined up in one week.  I'll meet with Van Tine the following Thursday to hear what the docs have decided is next up.  I'll be using this week to relax, get some work done, and not worry about what this will entail.  It'll be the first week in a long time without having to go to the hospital for anything, and I plan on enjoying it.

I also put up some pictures that I've been putting off.  There is one of my lab from before starting chemo.  I can't thank them enough for all the support they have given me.  One of Anna and I at the Yazoo brewery in Nashville about two weeks into radiation and the low point of my hair content.  One of my parents and sister Amy when they came down to visit a few weeks ago.  The last was last week at the Cardinals game with the triumphant return of my hair.


Pictures: Hair there, gone, returning, and back





Sunday, July 21, 2013

Restless

It's 6:30 on Sunday morning, and I've been awake and restless since 4.  Spent the first hour shifting from the bed, to the recliner, to the couch; trying to find an accommodating space where I can fall asleep without switching every other minute to being too hot to too cold.  But this is great compared to where I was before I started treatment.  My back pain is very well managed by the right amount of drugs which used to the the overriding reason for not being able to sleep.  And it's only been happening off and on instead of almost every night.  The month I spent sleeping on Anna's couch since it was the only place I could find some relief wasn't that long ago.  Plus Shradha gave me her Showtime password for my graciously given iPad which meant an hour of this morning was spent watching Josh Blue's hilarious standup.  I highly recommend it.  Especially to my brother in law Jared.  It's your kind of humor and you have the potential for the same kind of scruffy homeless look.  All the same, last night still sucked.

Almost puked already this morning too.  I just drank an unappetizing ensure to keep my weight up so I made sure to swallow it back down quick since I wasn't a out to waste both the time and money spent swallowing that expensive crap down.  The steroids don't seem to be holding their magic the last few days, which a small group of onlookers noticed as I walked over to the baseball game last night.  I've now gotten used to it so it was a quick mouth rinse, a piece of gum, and I was good to go.  At least I didn't lose it in the bleachers like I was worried about.  Wish the game itself had that much excitement.  Most of the scoring happened before we got there (far to hot to show up on time), and the Cards ended up losing.

In other news, I have little more than a week left of radiation.  After that I'll have the usual round of scans and doctor pow-wows to see what will happen with me next.  I just talked to my radiation oncologist on Friday, and he said that my tumor is continuing to shrink.  He said the full effect can't be seen for up to three months, but I'll have moved on to my next treatment step long before then.  Just remains to be seen what that will be. 

Wednesday, July 17, 2013

Rock beats scissors, steroids beats nausea

The past week was fairly uncomfortable.  I had a five day or so stretch of nausea and vomiting after most meals.  Not having an appetite in addition made trying to eat a challenge and at times painful.  I almost forgot to mention my radiation induced sore throat that burns all the way down with every other swallow.  Needless to say, I lost a few pounds. 

Monday was the breaking point where the first thing I did was throw up before even attempting to eat breakfast.  The anti-nausea meds definitely were not working, including the new and supposedly more powerful kind they put me on Friday.  My regular radiation oncologist was out of town, but I was able to see one of the residents.  I am very happy with how it worked out.  His questions and examination was brief and to the point.  Then he recommended starting me back on dexamethosone (a steroid) that I get put on with every round of chemo and with my increased back pain before starting radiation.  My nausea also started at the same time that I stopped taking it for said pain, so I had a strong feeling that it would work to stop it.

Sure enough, I've been taking steroids for the past two days, and I have been feeling back to normal.  Unfortunately the docs say steroids have a bunch of negative side effects (shocking) so they don't want me to be on them for very long.  Hopefully, whatever is the real cause of the nausea will be gone by the time I go off them again.  The docs don't think it's the radiation, but I'm not overly concerned as long as the dex keeps doing its job.

I only have 8 more days of radiation left.  After that I will have another set of scans to see how well the treatments worked, and my team of doctors will pow-wow to see what they want to do next.  I'm hoping for surgery for a few reasons.  First of all, I just want together it over with.  Surgery has been hanging over my head since they first found my chest tumor, and I've had several potential dates come and go as it is.  Secondly, I want this shit out of my body.  Third, I want to start the recovery process after they potentially take out several bones and a solid chunk of lung so I can get back to doing the things I love like biking, climbing, etc.  Those things are probably a long ways off still with chemo still on the schedule, but I wouldn't have to worry about breaking my cancerous and more fragile bones.  Chemo is going to happen no matter what with treatments stretching into next summer.  I'll keep you all informed on what they decide. 

Monday, July 8, 2013

A few bumps in a smooth ride

Hello blog followers.  It has been two weeks or so since my last update, and that is due to a lack of new progress to write about and procrastination.  Radiation has continued to go smoothly, and I should be done getting treatment to my femur soon.  That should cut down on the usual hour that I spend every work day getting treatment.  One bit of news that I got last week is that radiation appears to be working since my chest tumor shrank a bit.  My radiation oncologist showed me the difference which was easy to see, but didn't appear to be more than a couple of centimeters.  He said radiation takes time to work, and we should see more progress in the next few weeks.  I will be getting radiation until about the end of the month so I am encouraged that my tumor will be much smaller by the time I am done.  

I have been feeling very well for the most part the last two weeks, and have been able to work regular hours in lab.  One small hiccup in that occurred Tuesday afternoon through Wednesday.  Tuesday was fine until my back started hurting to the point where I needed to lay down on my yoga mat.  Two hours of still being in pain lead me to go home with my labmate Shradha's assistance.  It was the most pain I've been in awhile which sufficiently freaked Shradha out.  I started feeling better about 10 minutes after I got home, and found out pacing around my apt like a caged tiger helped.  My back pain was back to normal Wednesday morning, but my stomach was very irritated.  I threw up every time I tried to eat and several times on the way in and back from radiation.  My nurse recommended I take the anti nausea meds I have from chemo, which worked very well.  That combined with a 5 hour nap seemed to cure me for the most part.  I was able to eat again by dinner, and was lucky enough to be able to spend some time at a friends Mexican 'BBQ'.  The food was great, and I wish I would have been able to eat more.

I'm hoping to have a smooth week to catch up on some lab work built up from a long, but enjoyable holiday weekend spent with my parents and oldest sister Amy.  Radiation continues this week, and I'm also hopeful that I'll feel good enough to take my freshly tuned up bicycle on a short (very short) ride to remind myself how it feels.   Wish me luck.

Sunday, June 23, 2013

Weekend vacation

This past work week was fairly uneventful.  I've been having radiation every day on my leg, pelvis, and chest which takes about an hour every morning.  It is fairly boring since I have to lay there and be very still, but it gets broken up by each transition between the different areas and music the radiation therapists have going.  There are some new suspicious spots on my right lung under my main chest mass that my radiation oncologist is worried about, so I'm going to have a ten day spread of whole lung radiation too starting sometime this week.  

No side effects to speak of so far.  I've been working regular hours and making progress in lab.  My boss has a fresh hypothesis about how some of the processes that I'm looking at are regulated which means I have to read up on a bunch of papers and test out a few things this week.  It seems like he might be onto something so it has peaked my interest.  I've been able to catch up on most of my loose ends so it is nice to have something new to work on.  

It was also very nice to get away to Nashville for the weekend.  Anna and I took off Friday afternoon once I got done with radiation, and after several hours of driving (extended substantially by road construction) made it to our destination.  My back was acting up a bit by the time we got there, so I was very happy to take up a ride offer by a bicycle/cart delivery guy.  He pedaled us to our restaurant which turned out to be a longer journey than expected.  Good food, beer, and the pain meds kicking back in powered me through the rest of the night as we walked up and down Broadway hearing various bands play some good covers.  The rest of the weekend was fairly pain free except for the usual occasion stiffness, which was great.

We continued enjoying excellent food and drink the rest of the weekend at various coffee shops, candy stores, a brewery, BBQ, and Thai restaurants.  Anna and I went to the Grand Ol Opry Saturday night, and it was interesting.  The average age of both the artists and audience was 60, but there were a few new singers to help the spread.  Some of the old guys were pretty good too.  Hearing "Rawhide" sung by who we can only guess was the original band was pretty fun.  We're happy we went, but figure it'll be a long time before we'd want to head back.  Probably once we'd get closer to that average age I mentioned before.

Now we are heading back for another week of regular life.  A substantial amount of Nashville brewed beer in the trunk will help ease the transition.  

Saturday, June 15, 2013

Radiation times 3

This Tuesday, I started my first day of radiation.  I checked it using a scannable ID card, waited for my name to be called, and headed back to the room.  The room is pretty large with a narrow bed that slides back and forth with an unattached, huge, looming radiation machine directly behind it.  It is about the size of a building's backup generator with three arms that come up from it and spin around me at different angles.  After laying in my mold, the techs got my marked body lined up with the lasers after various twists and pulls on the sheet I was laying on.  They closed the two foot wide door as they left, and the machine started up.  First, they take a series of CT scans to make sure I'm in the right position.  Then, they start the radiation which is one of the heads with two rows of lead teeth that open and close continuously to form various shapes and give accuracy to where they're delivering the radiation dose.  It goes smoothly and fairly quietly except for the buzzing sound produced when they release the radiation.  I've gotten fairly accustomed to it by Friday, and was mostly asleep for most of it.  The time in treatment has been slowly increasing since we started with just my chest, added my pelvis once that math was figured out, and will start on my femur next week.

The femur was a mostly unexpected surprise.  As I said last post, I had some bad pain in my knee/thigh that lasted the weekend, but went away on Monday.  I ended up getting some CT's done Wed which included my leg.  The radiologists didn't see anything on the CT or X-ray from last week, but there appears to be something on my femur looking back at my bone scans and MRI.  They think it is/was a metastasis that was there the whole time, but didn't get picked up on the PET scan due to background coverup from my bone marrow.  Since it might be something, and adding radiation to this area wouldn't up my side affects by a significant margin, they decided to start radiation on it too.  It was scary to hear about a potential new spot, but at least this potential new spot is really an old spot.  I'm sure I have plenty of very little microscopic dots of cancer I don't know about, but radiation and chemo should get them.  Especially after I'm done with 13 more rounds of chemo (knock on wood).

To finish this week's story, the reason I went in for the scans on Wed was due to some of the worst pain of my life on Tues night.  I took as many pain meds as I could, iced my back, transitioned between 4 different possibilities of sleeping places, but nothing helped.  We called the emergency number around 4 am or so, but the said the only thing I could do was go in for IV narcotics if I thought I needed them.  I decided to stay since I was starting to calm down and relax a bit with Anna getting cold washcloths for me and helping me cool down mentally as well.  We spent most of the next day in the hospital waiting for my turn on the machines, and waiting for doctors.  They think the radiation caused my tumor to temporarily swell, put pressure on nerves, and give me so much pain.  They upped my pain meds and steroids again, which has helped me get back to usual the last two days.

On a bit of good news, I was able to finish up a figure for a paper I'm collaborating on, and the primary group's authors all said my pictures were beautiful and more than they were expecting.  Now we just have to see how their last rounds of experiments go.  Then it'll be resubmitted to see the editors think it's as good as we do.

To remind everyone what the current long term plan is, I'll be receiving radiation Mon to Fri for 6 weeks, likely followed by 3 weeks of recovery, and will likely be followed by surgery.  My treatment schedule changes like the weather some weeks, so, as always, I'll keep you informed. 

Monday, June 10, 2013

Pain

In my previous posts, I might have mentioned that my back pain increased as I wound down form one treatment and approached the next.  It seems that this was due to chemo knocking my primary tumor's growth temporarily with it kicking back up again as it wore off.  Although this is unconfirmed speculation, my primary chest tumor has grown based on both my CT to get set up for radiation and another CT later last week to investigate some mysterious chest pain.  This growth has correlated with a very large increase in pain.  Thankfully, my doctors are very responsive to my changing symptoms so my pain killer regimen was tripled.  Although this has helped a lot (I no longer feel like someone beat my over the back with a steel rod), I've been fighting a losing battle with my back pain over the last week.  What was really interesting was my random left thigh/knee pain which made me limp all weekend.  My guess is that the tumor put some pressure a nerve from that area.  They took some leg X-rays, but I doubt they will show anything since my pain left today as quickly as it came on Saturday.    

I have been able to come into lab to work mostly regular hours, but now I've had to get the yoga mat back out to lay down on every couple of hours like before I started treatment.  Tonight, I ended up leaving lab early and was mostly confined to laying down instead of my planned return to get some needed work done.  Getting a fever and spending some time in the Cancer Care Clinic to make sure I didn't have a threatening infection didn't help with my time either. I will be gaining some time back thanks to the addition of a new lab tech whom I am training.  He is starting to be useful, so hopefully I can get some quality help with things as my treatment progresses.

The good news of this post is that I am starting radiation tomorrow at 1:30.  I was originally scheduled for Friday, but I emailed my radiation oncologist to see if we couldn't start any sooner to help out with my pain.  Thankfully, the people who figure out the magic behind getting radiation specifically to my cancer without zapping the rest of me came through early.  I should be in and out of radiation in only half an hour, so no hospital visitors will be needed for the next 6 weeks.  I'll let you know if it actually works out that way.


Wednesday, June 5, 2013

Change of Plans

Last week consisted of a gauntlet of tests including a PET, CT, Bone Scan, and 2.5 hours inside a high frequency MRI machine.  The scans went smoothly expect for the MRI.  My previous MRIs were in a normal machine, and I was so comfortable in it that I was able to nap.  I could definitely feel the "high frequency" as I proceeded to sweat through all my clothes as they imaged my spine and pelvis.  The tech running the machine was really nice and tried to make me as comfortable as possible by turning up the fan and giving me a cold, wet washcloth.  I asked him if it was the machine heating up or me heating up (like a potato in a microwave), and his reply was "Both".  Luckily, I had some Bogart's BBQ waiting for me when I was done which greatly assisted my recovery.

I didn't end up hearing any of the scan results until my Friday morning meeting with Van Tine.  He explained that the PET scan showed no activity in my metastatic tumors and a 50% activity reduction in my primary chest tumor.  This was very good news since no metabolic activity in my vertebral and pelvic tumors means that they are likely dead.  I'm not exactly sure what the activity reduction in my chest mass means since it was the same size physically, but it appears to be good news too.  My CT and MRI results confirmed these results as well.  My bone scan showed that I do not have any fractures.

Originally, the plan going forth was to keep my surgery date on June 10th and follow with radiation.  However, the plan changed abruptly once Van Tine was able to get a hold of Dr. Crabtree (my thoracic surgeon) on his Alaskan cruise vacation.  The issue is that the margins of normal tissue around my tumors are not very big and would be difficult to work around to ensure they got the entire tumor during surgery.  So with the original plan, the surgeons would have to do they best they could to get it all out and then use radiation to clean up any areas they couldn't get out.  However, Crabtree isn't concerned about operating after radiation since he does it all the time unlike many surgeons.  Because of all of this, they decided to do radiation first and then surgery.  Several people have asked me if this is good or bad, but it is really neither.  It would have been better if my primary tumor would have shrank, but things could always be better.

Once I was filled in on the changes, the doctors wanted me to get set up right away for radiation.  So Friday morning, I got a styrofoam mold made from my butt all the way up to my head so that I will lay in the same position every time during radiation.  The nurses also drew lines on me to help maintain this exact position as well.  My first treatment is June 14th since they have to do a bunch of math to figure out exactly how they are going to get radiation to my tumors and get as little to my normal tissue as possible.  In the mean time, I'm trying to get some things done in lab and live as normally as possible.    

Saturday, May 25, 2013

Memorial Day Weekend Update

I have successfully gotten through my 4th round of chemo.  The 4th and 5th days were long, slow, and anxiety producing since being on a hospital bed for 6 hours a day getting pumped full of various fluids was getting to me.  I've been pretty tired and really low appetite the last few days.  I started getting back into things today with a series of events with my mom and sister Tracy being in town.  We made the customary trip to the Arch, and things started turning for the better around lunch.  Anna joined us for a trip down to the Schlafly Taproom for a pig roast/garage sale.  Surprising enough I didn't have much of a problem getting down my pulled pork sandwich and beans which was a big change of pace from the chicken noodle soup I'd been thriving on the few days during chemo.  We spent half the afternoon at the zoo which was pretty manageable too.  Tracy was complaining more than me about being tired from walking around so I consider that a good afternoon of exercise.  Unfortunately walking is about the most strenuous exercise I'll be doing until after I recover from surgery.  Half due to fatigue and half to my lack of confidence in my cancer ridden vertebrae which is marked for removal.  My scans next week should prove very interesting both to that bone's integrity and how well chemo has been working so far.

My pelvic tumor ablation is also quickly approaching.  I met with my interventional radiologist on Thursday, and it was very informational.  First of all, Jack Jennings (the good doctor) is a very interesting and intense guy.  He strongly reinforced that my team is treating my cancer "very aggressively" and that they're going to "watch me like a hawk" as I proceed through treatment.  He told me to text or call him with any questions any time of day and will probably be walking me through my scan results over the phone Tuesday after his plane lands in Italy for a conference he's attending.  Secondly, I now know how the ablation will go.  Jack will be using heat ablation using a radio frequency needle instead of freezing the tumors which is what they were thinking at first.  They can be more accurate with the bendable heat needle than with making ice balls.  It's a little safer for my nerves too since I will be semi-sedated and will be able to alert him if I'm getting shooting pains down my leg. Ice ablation would numb the nerve so that I wouldn't feel the damage happening.  Jack isn't concerned about nerve damage with my procedure, but I'm happy playing it on the safe side.  Another benefit of heat over ice is that I can go home that afternoon instead of being admitted for a day for pain monitoring.  

The procedure is minimally invasive with only two small nicks in my ass for the instruments to get access to my tumors.  It will be CT guided so that he will have a very accurate and real time view to the areas that he is ablating.  Jack said he would be doing multiple ablutions over the whole area where my tumors were at my last MRI to get any little pockets which might not be visible in my upcoming scans which will likely show a reduced tumor size (knock on wood).  I'm hoping for the best, and I'll put up pictures from my new scans this weekend after I get back from a department retreat in backwoods Missouri.