More radiation and less kidney

In just 10 days, Stephanie and I are heading back to New Orleans for my second round of I131 treatment.  My scans seem to imply that treatment still is viable and Dr. Campeau has had several patients who have seen more response from further treatments so we are giving it another swing.  We fly out Tuesday the 15th, go straight to an appointment with a doctor and then I get admitted on the 16th for more radiation.  I know what I am getting into this time and have a cheap Chromebook that I will be using to watch movies, netflix, and just keep in touch.

The more worrisome side of the house are my kidneys.  As you may recall, my last two surgeries addressed tumors that were wrapped around my ureters.  This resulted in my kidneys getting backed up and putting strain on them.  I got stents inserted but they have a bad habit of clogging and causing further strain on the kidneys.  I am now in stage 5 chronic kidney disease and that means dialysis is coming and it is coming soon.

There are two types of dialysis but I am only eligible for hemodialysis where the blood is filtered through a machine and then put back.  To get to the point where I can do dialysis, I need to have a fistula installed in my arm, short circuiting a vein to an artery.  I will be having a consult to find out when I can get this done and it will still be several months after that before it will be healed enough to be used.  If my kidneys fail completely before that happens, they will need to put a catheter in my chest to be used for the dialysis in the short term.

These new developments really suck.  Hemodialysis is typically done three days a week at a dialysis facility and takes about 4hrs per treatment.  This starts to really interfere with life in a major fashion.  Two can be done on workdays but that really makes getting my 40 hours per week hard.  Of course, that is assuming I do dialysis one day on the weekend and that causes significant problems with camping, skiing, and any sort of activity.

Home dialysis is possible but Stephanie will need to be trained in placing the needles so that we can make this happen.  The machine is about 80 pounds and I would be connected to it every night for about 2-2.5hrs.  This makes everything a bit more tolerable but it still is a significant inconvenience to work and play.

I am not doing well.  I feel as if I am on the hairy edge of an emotional breakdown all the time.  The need for dialysis has hit me hard.  I know there are many people who deal with life on dialysis but this is just piling on.  There are people who deal with chronic cancer, people who deal with colostomies, people who deal with chronic diarrhea but I am tired of dealing with all of it.

I am not giving up and I am not stopping fighting but it is getting harder all the time.  Your support is needed and it is appreciated.

Slight increase in tumor markers

Just got the lab tests back this week and things are mostly stable.  Chromogranin-A is up about 10%, Neurokinin-A is up 10% and Pancreostatin is down about 2%.  What this means is that the Indium-131 treatment does not appear to be actively killing the cancer.  We will talk to the doctors in New Orleans to get a definitive statement but my guess is that we won't be trying another iteration of the I-131 treatment.

Broncos will beat the Chargers tomorrow and it is currently looking like the Patriots will be making a trip to Denver before their off season begins!  The Sea-chickens won today but the Saints really tried to make it interesting at the end...  In the early game tomorrow, Go Niners!

Two weeks till I get to ski Alta and 1.5 months to Crested Butte!  Snow has been great this year but River's swimming and the Boys' indoor soccer schedule are crimping our ski time...

And the beat goes on

It is 2014 and I am now over 12 years post diagnosis.  When I was first told I had cancer and had a chance to research my particular brand of cancer, I thought I had a 50% chance of getting to 10 years and, yet, I continue to roll.  I have certainly had road bumps along the way but I am hoping that I am going to be able to continue for another 12 years.

I got another speed bump in the first week of December when I had a bilateral stent replacement.  This was a procedure to replace the stents in my ureters that allow my kidneys to continue to filter my blood and generate urine.  In the first week of November, I got scheduled for the procedure and a minor infection was detected in my urine so I was given some antibiotics to clear that up.  Unfortunately, one of the antibiotics I was given was Bactrim.  Upon removal of my stents, one was completely blocked and the combination of that with the Bactrim punished my kidneys even more.

Back in late August, I had a creatinine level of 2.6 which indicates damaged kidneys ( ~1.0 is normal) but, just before the procedure, I was measured at 6.9 which indicates considerable kidney underperformance.  Four days after the procedure, it has declined to a 4.9 and, three weeks later, had dropped to 4.5.  What this means is that the kidneys are recovering some but it also implies that I am not returning to the prior level of kidney performance.

We spoke with a nephrologist (kidney doctor) today and she also felt that my kidneys would continue to recover and, fortunately, I am not in need of dialysis at this time.  I am not retaining fluid and my electrolyte levels are at an acceptable level so, as long as we maintain this situation, I should be able to continue without dialysis.  Of course, it also means that I need to be exceptionally cautious about anything that may damage my kidneys further as I don't have much margin for safety.

I am still awaiting the results of my blood tests to find out if the I-131 treatment beat back the tumors some but don't know if the recent kidney changes allow for further applications.  I will be sure to post those numbers when I get them (probably within the next week or so).

Ready, Set, GLOW!

Well, the time to head to New Orleans is almost upon us and this will involve my first round of MIBG treatment.  We go to the clinic on October 22nd for a 2pm appointment and then I check into the hospital at 1pm on Wednesday, October 23rd at 1pm for my injection.  The way I understand it, I will get an IV and the treatment will be infused into my body over the next hour or so.

Then begins my two days of isolation in the special hospital room.  I will not be allowed visitors for the next two days and will not be visited by the doctor until the 24th.  If all goes well, I will be discharged on the morning of the 25th and we will be on a flight home, early on the 26th.  I may feel some flu like symptoms over the next few days but symptoms should be fairly minor.  They have also never had anyone go into carcinoid crisis during treatment so that is something about we we do not need to be concerned!

Returning home, I need to avoid contact with pregnant women and very small children so if you or anyone you know meets those criteria, keep them away from me until after October 30th.  Various other restrictions apply such as not sleeping in the same bed as my wife and double flushing the toilet but, once we reach October 30th, all restrictions are off.  If you are interested there are details of the treatment and recovery period here.  Unfortunately, I will not glow in the visible spectrum...

Now, some of you have asked about the lesion that was seen on my right lung and appeared to be growing faster than one would expect for a carcinoid tumor.  We had planned on performing a biopsy (wasn't really looking forward to a big needle going into my chest) but several radiologists looked at the scans and were puzzled.  The shape, position, and other characteristics of the tumor made them think that this was not a tumor but, rather it is a round atelectasis.

I have never heard of this before but this is a collapsed, folded area of the lungs and occasionally occurs after being irritated from surgeries.  If this is the case, then we should see stable behavior on upcoming CT scans rather than the growth we would see if it were a tumor.  If it does grow, we will probably need to biopsy at that time but, for now, we will just wait and monitor.

Over the following couple of months, we hope to see a reduction in the levels of my tumor markers.  I don't expect that we will be able to see tumor regression but the reduction in carcinoid syndrome will definitely be appreciated!  If all goes well, we may return for a second round in 3-4 months or may look into PRRT in Europe if my kidneys can tolerate it.  Other options include a trial of pazopanib which is currently recruiting and has shown some anti-growth characteristics for carcinoid, similar to sunitinib.  It also, since pazopanib uses a similar pathway for slowing the growth as sunitinib, the success of both seems encouraging.

Time to get Radioactive

We tried the chemo route but that was a dead end with the cancer continuing to grow so it is time to seek out some new paths.  We also need to know about the mass on the lung to understand how to treat it.

About 4 weeks ago, I had another MIBG scan with the hopes that the lung mass would show up on it.  Unfortunately, no dice on the lung but I continue to be a candidate for MIBG treatment rather than just the scan.  MIBG uses either Iodine-123 for scanning (high gamma ray, low beta ray) or Iodine-131 for treatment (high beta, low gamma).  Gamma rays do not cause significant tissue damage but beta waves penetrate a couple of millimeters, killing the tissue they encounter.

MIBG attaches the radioactive iodine to a molecule similar to norpinephrine which is taken up by various tissues, in particular, carcinoid tumors in some cases.  Stephanie and I will go down to New Orleans on a Monday evening and have a clinic visit on Tuesday with me being admitted to the hospital at 10am on Wednesday.  At 1pm on Wednesday, I will be given a dose of the MIBG treatment and I will not be allowed any visitors for the next two days.

Thursday will have a visit from the doctor and, if things continue as normal, I will excrete a significant amount of the radiation through sweat and urine.  That means on Friday morning, I will be allowed to be released from the hospital.  Many return home on Saturday in case of nausea but we may wait until Sunday since we will be flying.  At this point, I will not be allowed to sleep in the same bed as someone else for the next couple of days and I should avoid contact with small children or pregnant women.

Over the next weeks and months, the iodine (half life of 8 days) will continue to burn the tumors and they will also monitor my blood counts as bone marrow also takes up norepeinephrine.  We will continue to monitor my tumor markers which should show some reduction in tumor load.  MIBG treatment does not normally reduce tumors in a fashion that can be monitored on CT or MRI scans but it does reduce the carcinoid symptom.

We don't have a date scheduled for the treatment but with the craziness of September and Steph's catering in October, we probably won't get to NOLA until the second week of October.  Fortunately, carcinoid grows slowly so delaying a while is not a big issue.

You may have heard me talk about PRRT in the past which is performed at many locations in Europe and is starting trials in the United States.  Unfortunately, PRRT is hard on the kidneys and I already have some kidney damage due to the tumors constricting the ureters and the associated hydronephrosis.  This makes me ineligible for the trials but we have not yet figured out if the trials are more restrictive so avoid complicating factors in the study.  If it is still available, we will probably be heading to europe in the future to try and get this treatment, probably paying for it with a loan from my 401k.

Now, about that lung.  I will be having a biopsy in the next few weeks to see if we can identify exactly what kind of cancer that mass represents.  I have been warned that the biopsy may fail to give a firm answer because the tumor looks like a cylinder and the doctor will be trying to hit the end of the cylinder.  If the biopsy fails to give a definitive answer, we will be forced to just monitor the mass and see if it behaves similar to the other tumors on my next CT scan.

Shut up Legs

Well, I finished the ride.  It was a brute and there were sections that just put me in the depths of pain and cold that I have not felt in some time.  The distance (120 miles), the altitude (11000+ feet of vertical) and the time from beginning to end (14hrs) are all personal records for me.  I have never done these sorts of numbers and I don't plan on doing them again!

So, how about some details.  I started at at 6:05 which was just 5 minutes later than I wanted.  I was fully outfitted with a camelback full of ice and water, a number of honey stinger strawberry waffles and two packages of Cliff Shot Blocks.  Honey stinger waffles are the best energy snack I have tasted and I recommend them to everyone.

The first climb was up Juniper pass and included a 1 mile detour because of road construction.  I slowly ground my way up the climb, envious of everyone with either compact or triple chainrings or riders with 32 tooth rear sprockets.  I was riding a standard 39 tooth small chainring and a 28 tooth rear sprocket and it made grinding along at 5mph quite rough.  I was wanting to push over all the riders flying past at twice my speed and carrying on conversations with their partners.  I finished the climb in 2:31 which is just one minute behind my planned schedule and had me feeling quite good.

The next section was the ride down to Idaho Springs (I may not climb well but I can really decend!) and then up into Georgetown.  This segment went quite well and I made it to the rest stop at 4:10 which was just 10 minutes behind schedule.  I ate some snacks, refilled water, and got back on the bike for the next climb after a 15 minute break.

The third section is a nasty climb up to the Loveland Basin ski resort.  This sits at 11000 feet, 5000 feet higher than the famed Mont Ventoux in the Tour de France that is being ridden today (7/14/13) and is widely seen as one of the most vicious climbs around.  This was my absolute worst segment.  I had a goal of riding this segment in 2 hours but came in at almost 3 hours.  I took a 30 minute break at Loveland, trying to convince myself to go on and getting encouragement from my support team of Stephanie and Forrest.

The forth section starts with 1000 feet of climbing over 4 miles to top out at just a shade under 12000 feet above sea level.  My lungs really felt this climb and I had a goal of stopping at most every half mile.  I made the first mile with this goal but, after that, my legs fell apart.  I often would get less than a tenth of a mile before having to stop and recover.  Whenever my heart rate would break into the low 160s, I would stop and wait for it to recover into the low 130s before going again.  I finally crested the summit and then took a moment to zip up my wind jacket and start the long descent into Keystone.

The descent was fun (Strava put me in the top 40% of all descenders on this section!), even though there was a headwind all the way down.  We then turn onto Swan Mountain Road which goes around the north side of Keystone and has a small climb over Swan Mountain.  Here I met the first of the monsoon weather.  Stephanie stopped and helped me put my Gortex pants on which do an awesome job of keeping me dry and I rode right into the rain over Swan Mountain.  The rain stopped by the time I hit the rest stop at Summit Highschool and I thought I was done with weather at this point.  I left Summit Highschool at 10 hours since I started which is about 2 hours behind my planned schedule.

The ride into Copper Mountain was actually quite nice and I had the first of a tailwind that would follow me all the way into Avon.  At Copper Mountain, Steph offered me my rainpants and I refused which was one of the worst mistakes I made on the ride.  Just as I left the resort, the rain started.  This was not a normal Colorado rain but an honest to goodness West Michigan downpour.  Visibility was often down to less than half a mile and the rain was COLD!  I took shelter in trees a few times during the hardest parts of the downpour and avoided the hail I saw on the trail but this made it brutal.  I finally made it to the summit of Vail Pass at 6pm, 12 hours into the ride and was relieved to see my support crew with the engine idling and the heater on full.

I spent a while in the car, trying to warm up and dry off some before doing the final descent.  I put on my rain pants, dropped my windjacket, soaked arm warmers, and wet jersey, putting on a dry jersey, a hoodie and a Columbia rain jacket with a rubberized interior.  This combination was sufficient to keep me warm on the final segment of 28 downhill miles.  I took my time on the descent since a quarter inch of water on the roads, slick new paint stripes, and narrow tires do not lead to decent traction.

Regardless, the combination of newfound warmth and a tailwind allowed me to race through Vail at 20+ miles per hour.  Finally, I saw the signs for Beaver Creek resort and knew that my goal was in sight.  I hit the final roundabout,. made a quick left and a right and saw the finish line.  What few fans were left were cheering but Stephanie and Forrest cheered the loudest.  I came across the finish line and got my first ever bling at a bike ride, a finisher medal for the Triple Bypass.

So, 14 hours after I started, 11 hours of moving time, 14 hours of total time, 119 miles, and 11,142 feet of vertical, I was done.  My shoulders ache, my legs and knees are sore and tired and my pinkies are still tingling from so long holding on to the handlebars.  I know people were coming in after me so I am not DFL (Strava has me 120th out of the 120 who logged their ride on Strava) and I know I finished.  I don't plan on EVER doing something of this category again.  I suffered.  I almost quit many times.  I could not have made it without my 'crew'.

13.5 months ago, I had 3 days of marathon surgery for 22hours.  7.5 months ago, several of the doctors wanted to just send me home to be handled by hospice until I died.  Fortunately, Dr. Boudreaux disagreed and spent 12 hours of surgery, getting me back to a state where I could recover and thrive.  I don't plan on doing a ride like this ever again.  I will do long rides, centuries an metric centuries.  I may even redo segments of this ride but I have no desire to ever do this brutal of a course again.

Hows about those lungs?

We went to New Orleans for an evaluation of how well the oral chemo drugs have been working.  I have been taking 1500mg of Xeloda morning and night for 14 of 28 days and 300mg of Temodar for 5 of 28 days.  The Xeloda has been causing me some additional diarrhea along with some hand and foot syndrome (dryness and cracking of the skin) but have been tolerating it relatively well.

We brought down disks from a CT on 7/2 and an MRI on 7/3.  Both were done without contrast as my kidney function is not sufficient to tolerate the contrast in my body.  This means that the scans are not as precise as desired and it is a bit more fuzzy compared to scans with contrast.

The radiologist for the MRI was a bit of a dumbass and compared back to a CT in 10/12 rather than the MRI from 2/13 that they had in their system.  10/12 was prior to my surgery in 11/12 so the comparison is mostly useless.  Dr Campeau in New Orleans will do a comparison in the next few days to get a real understanding of the difference.  However, the CT was done with a reasonable comparison to 2/13 and the abdominal and pelvis tumors seem to be mostly unchanged or a slight amount of growth.

This time, the CT included the chest and we got a good image of the lungs and that is where the issues showed up in this scan.  A 43x14mm mass was detected in the lung and, of course, we don't know what it is and, right now, we don't know how long it has been there.  Dr. Campeau will be looking for this mass in previous scans to try and determine if we have seen it before and how it has progressed.  Dr. Ramirez is concerned that it could be early stage lung cancer or it could be typical carcinoid or, if it has grown quickly, it is a-typical carcinoid (more aggressive).

The plan for now is that we will have a PET scan in the near future.  Typical carcinoid does not respond to PET so if this mass does respond, then it is either a-typical carcinoid or it is a lung carcinoid.  It is also likely that we will perform a biopsy of this mass to accurately classify its type.

Once again, this means that our future is uncertain.  We will be continuing the chemo, at least the Xeloda.  Just before we left, we got a letter from the insurance company saying that that I was receiving the Temodar due to, essentially, a clerical error.  They need to get some more documentation from my doctors to ensure I am truly in need of the drug so we have about 1.5 weeks to get that taken care of or I will miss this round of Temodar.

In other news, I will be attacking the Triple Bypass on July 13th.  This is a ride of 120 miles over 3 mountain passes with a total of 10000 feet of vertical.  I am planning on starting at 6am and hope to reach the top of the first pass (Juniper) by 9am.  This is 3500 feet of vertical over 17 miles.  A couple of weeks ago I rode Monarch pass which is 3000 feet of vertical in 10 miles and I did it in under 3 hours.  This makes me think that Juniper in 3 hours is roughly right.

There are then three rest stops, echo lake at the top of Juniper, Georgetown at 42 miles and Loveland basin at 56 miles.  My goal is to then make it to Loveland basin by 11am.  This is about 15 miles of screaming descent and then 26 miles of climbing with 3000 feet of vertical gain.  This may be a bit optimistic but they have one lane of Loveland pass closed from 10am through 2pm so I want to be on my way up the pass in that window.

Given I make the previous, I have another 1500 feet of vertical over 4 miles to crest Loveland pass and then I fly down the other side into Dillon, CO.  This includes a short climb of 500 vertical feet before I hit the next rest stop at Summit Highschool with a goal time of 2:30.  This is 77 miles into the race and, if I make this point, I believe I can finish.

I then have 1000 feet of climbing past Copper Mountain to get to the fifth rest stop at the top of Vail Pass and mile 92 with a goal of 4:30.  Reaching that point is key because I now have 3000 feet of decending over 38 miles that takes me into Avon.  There are going to be ever so slight climbs at places and my legs will be screaming at me until I make that final stop in Avon and a finish time of around 6pm.  They close the ride at 8pm so that gives me a little bit of slack in my schedule.

Will I make it?  I hope.  If I make it by 6pm, I won't be last but I will have finished.  Even if I don't finish, I will have started.  As my best friend told me, Dead F'ing Last > Did Not Finish > Did Not Start.  I know he stole it from a running blog but it applies to anything.  Just attempting something is an accomplishment.  Finishing is fantastic but not necessary and, even if you finish, DFL is still something to be proud of and is even a point of pride in some of the highest levels of competition.