Back home again and I am not fine.

Home from New Orleans and I am not doing so well.  I weigh in at about 190 pounds right now and that is about 45 pounds of fluid buildup from all the IVs that were running in me last week.  The procedures were supposed to be easy with my returning to work right after return but the days in the ICU have made that impossible.

I feel as if I am right back where I was in June after that marathon surgery.  My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding.  I am not fine and I feel like the mountains just keep growing in front of me.  Stephanie saw someone else's blog post and it fits the way I feel right now.

I have trouble telling people how I really feel.  People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal.  I do let some people know but it is hard not to say 'fine' when I am asked.  Do they really want to hear the real answers?  Do they really want to plumb the depth of things that I am dealing with?  I know people care but it is hard to get away from 'fine'.

I have the new perc tube with the associated drainage bag.  I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney.  I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.

Recovery is not what it used to be for me.  I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully.  These last few incidents have been far from bouncing back.  These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.

I have given up on playing hockey for the foreseeable future.  My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing.  I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.

I haven't given up on skiing yet.  I think a 6 run day now would be right at the limit of my capabilities.  I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.

So, I am not fine but I am trying to get there.  If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.

One more procedure and then home (I hope)

The procedures we were planning on doing last Wednesday had a bit of a hiccup.  The urologist was able to insert the left stent with no problem but the right stent would not go.  Finally, they called in an interventional radiologist and put a percutaneous nephrostomy tube in the right kidney.

Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time.  The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).

Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis.  Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week.  They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.

So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below.  Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors.  If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.

Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol.  This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass.  Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors.  The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.

So, we sit and wait today for the procedure tomorrow.  My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling.  Hopefully back in the Springs by Wednesday!

Trapped in NOLA again

Stephanie was worried Tuesday that the wouldn't let us go after the procedures but I assured her that that would not happen but here we are, trapped for a while in NOLA.

Th procedures did not go as planned big time.  The stent swap went well for the left kidney but the right caused problems.  The stent that was in there did not appear to be allowing the kidney to drain and it was full of liquid.  About 150 ccs of the liquid was dark brown and they think it was old blood but are doing culture on it to make sure.  The culture will tell us in 48 hrs if it is infected or not and then another 24 hrs if it is infected to find a treatment.

I do have a temporary percutaneous nephrostomy tube in my right side and it does indicate that the kidney is at least producing urine so we are hoping that it is also filtering the blood and labs should show that.  Of course, that takes a few days to find out.

So, we are trapped here again.  If the kidney is functioning, we need to find a way to help it drain.  If it is not draining we need to decide what to do with it.  Leaving it in may lead to infection so they may want to do surgery to remove it or they may not.  We just don't know at this point.  Hopefully we will at least be able to leave the ICU today or tomorrow and be in the nice rooms on the fifth floor.

It sucks.  We did not plan for this and thought the worst case had us coming home on Monday because the prices for flights. Now we may be doing a procedure on Monday.  It really sucks.  Steph just started a new job and they knew she was going to be out this week but now things are up in the air and that puts strain on her and her job.  It really sucks the big one.

Those tumors on the rectum are large and appear to be pushing against the prostate and other organs.  We don't know when we will be able to address them or if they are treatable.  Just one more thing that sucks about this trip.d

One thing that was good was our meal Monday night at the red fish grill.  We ordered the crab cake and the grilled red fish and it was one of the best meals I have ever had.  It was on the pricy side but it was phenomenal.

On my way home again

Today, Monday the 26th, I have been released from the hospital again.  I talked to the doctors about what happened and they believe that the scar tissue has caused some tight corners in my bowels and that these tight corners can lead to intermittent obstructions.  When these obstructions occur, I need to get to the hospital, get my favorite NG tube (hopefully after 3mg of dilauted again) and wait out the obstruction.

The NG tube should decrease the pressure on the obstruction from above while slowly releasing from the bottom until it is gone again and I am back to normal.  This is not a great way to live but it is a life and I can move forward with this.  I am hoping to get back on TPN for a period of time to help regain some body mass, supplementing what I am able to consume orally.

I have a flight out of NOLA tomorrow which is actually relatively cheap at $140 with a layover in Houston on United. I can spend the next two weeks recovering from this episode before coming back down to get the tumors around the rectum zapped.  While down here, we will also take advantage of my being in the hospital to swap out my ureteral stents as well.

So, this means returning to full time work is delayed again.  I feel like a slug but noticed today that my legs started to collapse when I tried running across the street.  It is difficult to look so normal in so many respects but to have such a depleted body in so many other ways.  I know I need to heal and I know people understand but I find it difficult to accept.

I so appreciate having the handicapped parking permit but often feel a bit like a poseur when I use it.  Other times, I am so appreciative of it when I have a hard time just making it to the car after work.  A few weeks ago, I thought the wind was going to prevent me from making that walk but I did it and was thankful for it.

It makes me think of all those times I judged people with their permits who 'looked' OK but, from my high horse, I could not see their problems.  We need to ensure that we don't judge people we don't know.  Until we are in their shoes, we don't know what problems they are dealing with or what their reasons for having that permit.  I need to watch this and I pray that you also try to avoid judging people that you don't know.

I will be home soon.  I Missed my wife and kids terribly.  Stephanie sent me flowers that were beautiful and I was able to then give them to a nurse today who said she did not get anything for her birthday this year.  Hope that this made her day brighter for having (vicariously), known the wonderful and beautiful woman that is my wife and my light: Stephanie.

Obstruction time again sort of

The last month has been a continual degradation of my condition as another bowel obstruction has set in.  There were many clues along the way but it has resulted in my weight dropping below 140 pounds now which is way too low.  I have also experienced vomiting of undigested food, severe abdominal cramps, and lack of appetite.

On 10/15, I had a CT to try and see if I have and obstruction but the results were inconclusive.  Finally, on Monday, 10/19 we made the decision to come out to NOLA and just see what we can get accomplished out here.  For the first time, I have come out here alone while Stephanie is at home with the kids and her new job.

In this initial phase, there is little to no risk of complications so there is no huge need for Stephanie to be here.  If things to start to change to where surgery becomes a plan, then Stephanie will come out here and we will head back into that dark place again together.  Until then, it is just me and my thoughts here in the hospital room.

On the positive side, they did do an X-ray in the ER and have confirmed our suspicions of a bowel obstruction!  They then put in an NG tube (still hate those) to try and decompress my bowels from above while waiting for the obstruction to pass.  I have not yet been started on IV nutrition (TPN) yet but hope that will be coming soon.  I also have not yet seen the doctor, only his resident at this point.  I know he was in surgery all day yesterday and usually has more surgeries on Thursday so I don't know when we will encounter each other.

I got to see the surgeon on Thursday and he ordered a small bowel follow through test.  This test involves swallowing some barium and then taking x-rays at 20 minute intervals to follow its passage through the bowels.  Back in April, I had this test and it took about 8 hrs to make it through when a 'normal' passage time is between one and two hours.  Wouldn't you know it, it passes in a little less than three hours.  I haven't seen the doctor again nor read the report but this seems to imply the obstruction has eased.  Perhaps I can eat soon!

These sorts of situations can happen.  With the lack of eating and the NG tube relieving pressure from above, the bowels can relax and the obstruction can release.  I don't know if it will happen again or what to do next time it occurs but we need to find a way to work with this without me losing a great deal of weight again.  Perhaps we do TPN as a supplement to normal eating so that I don't end up losing as much weight and am able to maintain a more healthy level.  I don't know but will post an update when I learn more.

It suck but here we are and this is what we have to deal with.  You play the cards you are dealt, not the cards you wish you had and that is what we will do.  I miss my wife and kids but will get to see all of them soon.  Until then, bad TV, books, and sleep.

Lots of minor surgeries planned

Today is August 25th, 11 weeks post surgery and we had a checkup with the surgeon, Dr. Boudreaux.  He is very pleased with my progress and reiterated that recovery would be very slow, given the 15% weight loss prior to surgery along with the 14hrs of prolonged surgery, 4 units of blood, and 2 weeks post hospital stay.  I continue to desire faster and greater recovery but must live with what I have been able to accomplish.

On the plus side, he has written me an authorization for a return to work on September 8th as tolerated.  I plan to start back to work on the 8th, doing 20hr days, working a 9-1 schedule, working in all my doctors, PT, and other appointments in the afternoon.  This also gives me plenty of time to nap in the afternoon if needed and to take a slow start to the workday in the morning.

As to the future, we are currently planning short simple surgeries to address the tumors around the rectum.  We will be performing minimally invasive surgery using nanoknife with an entrance through the anus to try and ablate the tumors as much as possible.  There is so little room in the pelvis to work, the hope is to reduce the size of the tumors with the minimally invasive surgery so that a major surgery has much less to do when/if it occurs.

This surgery is scheduled for November 11th with an MRI on November 9th and a clinic appointment on the 10th.  Surgery will then be on the 11th if possible or the 13th if not.  Potentially, I could be released the day after surgery but Dr. Boudreaux is planning on keeping me in the hospital a few days as we ween me off of the Sandostatin drip.

The advantage of using nanoknife is that the only external wound I will receive will be large needle pokes through the wall of the rectum.  Since I currently have an ostomy, there is little possibility of infection and the healing is very quick.  Nanoknife works well for ablating tissue in sensitive areas as the area between the ablated tissue and the non ablated tissue is very sharp, allowing one to get close to good tissue without damaging it.  Of course, it still is surgery and that always caries risk but this, compared to the 14hrs two months ago is almost a walk in the park.

If this is successful, we may return for treatment every 3 months or so and evaluate when a major surgery may take place to complete the debulking and to address the ureter.  This could be next summer but we don't know much at this time.

So, in two weeks, I head back to work and life starts another big step forward.  Thanks for all the support so far and the well wishes that I have received.  Now to get back home and out of this insanely oppressive New Orleans heat/humidity!

Gaining strength and endurance

Recovery is progressing, probably at the rate that doctors may expect but at a rate slower than I desire.  I left the hospital with all my muscles atrophied to an extent that I had not realized.  My first walks at home were just three houses down the street and back home which took almost all I had.  My arms have lost tremendous amounts of strength and that is saying something, given my lack of musculature that I had before the obstruction.  Upon coming home, I was able to do only about 20 arm curls with my left arm with a less than 1 pound weight.

I am now able to make 2 mile walks, even with a significant hill coming back home.  My arm curls have now progressed to 3 pound weights 30 times but it is a stretch getting to that 30th curl at this point.  I am still very weak but I do see the progress and know that it is just going to be a matter of time until I am closer to whole again.

Stephanie and I head out to see the surgeon in New Orleans on the 25th of August and hope to get his clearance to return to work at least part time. shortly there after.  I may delay it until after Labor day to ensure that I am able to tolerate both the time at work along with the drive and walk into work that I anticipate.  That will mark 13 weeks post surgery which is still ahead of the rule of thumb of 1 week for every hour of surgery (14 in my case) but I have the months of lack of eating to make up for as well.  That said, part time will be more tolerable than a full time schedule and is something that works well with the long term disability policy that Metron has provided.

I am also looking forward to playing hockey once again but that is dependent upon my regaining sufficient strength as well.  I still have to struggle back to my feet when I am on my knees and I worry about how well I will or won't be able to move my glove hand (right arm) with the additional weight and resistance of goalie gear.  The next session of hockey will likely start on August 31 but the next game is Labor day and I am hoping I may be able to return to the ice for that game.  First, I need to try skating and perhaps go to a sticks and pucks session or two to evaluate my readiness.

The other issue causing me concern is my colostomy.  Losing 25 or so pounds has changed my body shape quite a bit and it is causing issues with keeping things in place.  I am experimenting with new products and new techniques, hoping that they can solve some of these issues which must be resolved before a return to work or hockey can occur.

I am being somewhat successful in eating which is a good thing.  I am now up to about 146 pounds  and am gaining weight at about half a pound a week.  My stomach seems to be expanding again and I can eat more at a single setting than I could a month ago.  I do also continue to consume supplements such as Ensure or protein bars and I try my best to plan my meals and food around calories and how this will benefit my weight gains.

Finally, I am receiving physical therapy to address the numbness and tingling in my left arm.  The therapist always asks if things feel better and it is extremely hard to evaluate.  The same way that it is difficult to notice someone's weight gains or losses on a day to day basis, it is difficult to evaluate these changes for me.  Fortunately, on my first day of therapy, they performed some tests that have a definite ability to measure changes and we will re-evaluate the changes at a later point to give a measure of certainty.  For now, I just need to believe that they are doing things that will help make my disability better.

Overall, things are looking up.  I have come a long ways from the brutal surgery that I endured and the bizarre post-op period in the ICU.  I am on my way to full recovery and look forward to seeing everyone at work and play!