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.  

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. 

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.

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.    

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.

Round 4

Today is the first day of my fourth round of chemo.  It's been a pretty quiet day so far with only rain storms and a very talkative man in the bed across from me interrupting the peace and somewhat quiet.  Chris, the talker and a very nice guy, has stage four esophageal cancer.  He and his wife are hoping that the chemo and radiation will work and he'll be enough to go on their big trip to Jamaica.  Today is actually his last day receiving chemo, but he doesn't seem very optimistic about life.  We talked for awhile when his wife was getting breakfast and he told me that he wasn't afraid to die and was almost a gift to know you're going to die. Now he has to wait two months to see whether the treatment worked or not.  I'm not sure what to think about Chris, but it was interesting having a candid conversation with someone who likely has terminal cancer.  It helped me put things in perspective a bit since I have completely opposite feelings about my cancer since I am banking everything on being cured by the end of treatment.  My next round of scans should be informative on how effective my treatment has been so far.

I'm getting about every scan there is before my surgery.  I have two MRI's, a CT, a bone scan, and a PET scan set up for next week.  I've had all of them but the bone scan before, and it will be interesting to see how much bone is left in my cancerous vertebrae.  I'll know the results next Thursday morning with more pictures to be put up on the blog after.  They'll be some delay since I'm leaving town immediately after the meeting to go to the dev bio dept retreat.  I'm happy that I can still do some traveling this summer even if that means just to the 'resort' in the boonies west of STL.

Balanced once again

The past week was nice and uneventful.  My body fully balanced out from the last round of chemo on Wednesday with my taste, smell, sleep, and GI tract returning to a normal state.  I've been working fairly normal hours in lab too with my experiments coming along at the regular rate of two steps forward and one step back.  I ended up leaving early for one reason or another about every day last week.  I wasn't feeling the best towards late afternoon each on of those days which was alleviated by laying around and resting.  I'm planning on working a nap earlier in the day to see if it helps so that I can work longer each day.  Hopefully my favorite couch in the library basement will be unoccupied.

I have this week off from treatment, with the following week taken up by a 5 day chemo treatment.  This will be the last one before my surgery.  I currently have an MRI set up on May 28th to see what my tumors are currently looking like so the many different doctors can plan out what they want to do.  My cryoablation to freeze-kill my pelvic tumors is on June 4th.  My surgery remains on the 10th, and radiation will follow once I recover from that.  Each step in that process and exactly what they are going to do remains very ambiguous since it all depends on how my scans look.  For instance, I met with my radiation oncologist last week to see what his plan is.  He might radiate only some places or all, for 1 heavy week or 6 lighter weeks, or not radiate anything at all.  My surgery is in the same kind of situation with Van Tine saying the room and people are all booked, but they don't know what they will be doing yet.  So that means I have nothing to do but what and see.  Fortunately, I have plenty of stuff including lab work, visiting family, program retreat, and organizing my new apartment to keep me busy.