Release Day + 4

Good News!  I was allowed to leave the confines of the hospital Saturday morning, Day 9 following surgery.  Physically being out of the hospital is GREAT!  But the real good news is the result of the biopsy.  Dr. Kent last Thursday stopped by in the afternoon to check my bandages and see how I was.  Other than being terminally bored in the hospital, I was fine. (Barbie speaking here: so sleeping 22 hours out of every 24 indicates “terminal boredom”, vs “acute healing”?)  Just as Dr. Kent was about to move on to the next patient, she mentioned that the results of the biopsy were very good.  Yes, the growth was large, somewhere between the size of a quarter and a $1 coin.  But the real news was that it was non-cancerous.  Definitely pre-cancerous, but it had not yet made the transition to cancer.  This is fabulous news!  It means I can just concentrate on recovering from the surgery;  I don’t have to deal with radiation or chemo-therapy.  Whew!

The downside of being home is that I am exhausted.  Yes, I did a few stairs once in at Beth Israel, just to make sure I was stable enough to do them.  But my default location here at home is my office (where I am now), which is upstairs.  Getting a meal, doing an infusion, taking some pills, virtually doing anything but typing at my computer involves a trip down + up the stairs.  I am taking the stairs slowly, but by the end of the day, I am pretty doggone tired.  As promised, I am finding that I have no appetite and taking nourishment, even in very small quantities, is a real chore.  Apparently inadequate nutrition definitely delays and interferes with healing, but it is not easy to force unwanted food down.

Just in case we thought the drama was coming to a close, earlier today, almost on a lark, I decided to check the BIDMC Patient Site, which has the results of recent tests.  On Saturday they sent blood out for the traditional Multiple Myeloma tests.  Usually it takes 3 working days for the results to come back, but I thought I would give it a try.  The results are in, and they are disastrous.  The Free Lambda reading is 2027.  The highest reading I have ever had before was 1329, back in 2012 when I was first diagnosed with MM.  The last reading before my surgery was 803, on 6/13.  So maybe the reason I am feeling exhausted is the imbalance in the blood, not the extra exercise of the stairs.  I’ve called into the hospital, but Dr. Levine, my MM Oncologist, is on vacation, and getting the right person to call back is turning out to be a challenge.

We are now set up to see Dr. Levine next Thursday and to have a chemotherapy infusion all day Friday.  Apparently they don’t want to start the chemo too soon, as the treatment impairs the healing from the surgery.  The infusion is required because of a concern that medicine taken orally might be affected by lack of absorption in my newly reconfigured gut.  I expressed concern about waiting for another 9 days to begin treatment, and Dr. Levine said the Free Lambda number would go higher, but he felt this plan was best.  I have no choice but to trust him.

Meanwhile, a blog post without a few pictures would be pretty boring.  You may not really want to see some of these pictures, but I’m going to post them anyway.  Here is my actual wound.  This photo is from the hospital, so things are looking a little different now.  But the general idea of the staples and the overall grin that the evidence of surgery presents is impressive, IMHO. 

 

Here is another, more recent view of the incision.  This is after a couple of the staples were removed and the result is a much more open wound in the middle.   But everybody seems to be happy with how it is healing.  Barbie is not happy about changing the dressings and tending the wound three times a day, pointing out that there was a reason why she did not go into nursing/medicine.  But she has risen to the occasion and found yet another area in which she can develop competence.

I still have 2 drains coming out from below the grin that allow fluid that builds up above and below the pancreas to have a place to go.  Actually, those drains are pretty comic in themselves.  They resemble an extra set of gonads on some pretty long strings.  Who would have known that fluid from around the pancreas would resemble soupy pinkish peanut butter?

Here is the highlight of this post.  Perhaps the single most annoying aspect of this procedure was a tube that went up my nose and down into my stomach.  It was known as a Nasal-Gastric tube or NG tube.  A very pure form of torture.  It had to go through the vocal cords, so I was only able to speak at a whisper.   And if I needed to cough, the tube prevented the vocal cords from blocking the way to the other tube, resulting in a very weak cough.  Since coughing when you have a healing stomach is inherently painful, only getting part of the effect of the cough was very frustrating.  At any rate eventually they decided that the NG tube could come out.  Here is a link to the video that Barbie caught.  https://youtu.be/UfaZmoyYGk8.  19 seconds that led to real relief.  It was the highlight of that day.  And the 2-3 days after that, as the vocal cords themselves proceeded to heal.

Finally, here are my feet and ankles at full swell, yesterday.  Today they are still swollen, but less so.

Overall, in spite of the drama, things are proceeding fairly nicely.  I am getting my appetite back, and getting lots of rest.  It may be a while before I am at full thrust, but we have started down the comeback trail.  I have to say that Barbie's devotion to my cause is a great help, and even I acknowledge that the things she is nagging me about are valid.