April 27, 2016

Destination Unknown

Post-transplant day 865.  --Destination unknown.--

For the first time in my life, I have no idea where I’m going.

Duke Admissions February-March 2016.  February 18th thru 23rd for 1) high creatinine detected by both UNC [4.7] and Duke [4.9] on the 16th and 17th, respectively; 2) high blood pressure, noted on admission; 3) blood in stool.  Late night admission; immediately given IV fluids.  Creatinine drops over a few days until 2.5 at discharge.  Consults, medicine changes throughout stay.  Attempts to control blood pressure w/ medication changes complicated by changes to meds prompted by advanced kidney damage.  Finally settle on DCing metoprolol, re-starting amlodipine at half strength, and added carvedilol and hydralazine 3x day.  Fosamax DC.  Calcium cut to half. 
  -- from my notes

Throughout my life, I’ve been able to hazily foresee my future, or possible futures.  I could tell where I was going to go to college, where to grad school, what occupations I’d make a life of.  I could predict the course of my disease to a great degree up to and including transplant.  A life of a transplant has its own divergences, beyond the infections, sinusitis, lung collapses, hemoptysis, liver disease, kidney disease, pancreatic insufficiency, malabsorption, and diabetes I’m already familiar with.  New maps have had to be called up - new skills learned, new possibilities considered.  Many are mentioned, but the big one we all mentally prep for is rejection.  As yet, I have no experience with that.  I have, however, experienced multiple lung infections, a marked increase in my kidney disease, and the onset of hypertension and anemia.  Still - I can handle these.  They were on my map as possible parts of the journey.

What has taken me by surprise, though, is a diagnosis of cancer.

Felt pretty wiped out upon discharge.  Still having bloody stool and headache.  But blood pressure and creatinine under control.  Spent February 24 at April’s.  We talked and decided that the bloody stool hadn’t been addressed with seriousness - plus it was getting worse.  Back to ER in the morning of 25th.  Spent all day there; started Miralax prep 8pm finished by midnight.  Moved to 9327.  Colonoscopy the afternoon of the 26th.  Preliminary results back by 6pm.  

A 5 cm mass has been found in my rectum.  Biopsies were taken and will be studied…soon.  April spent the night with me - tearful, angry, frustrated with me (partly) and the system (mostly).  She’s smart as a whip but she doesn’t know how to redirect her emotions well.  Probably best night I’ve ever slept with her, though, even on that twin-sized hospital mattress.

I just have very few reference points to help me navigate this.  I am depending more on the doctors now than at any time before, as my close friends and family also have little experience with cancer or modern treatments for it.  To keep up with the journey metaphor, the atmosphere has become rather hazy, yet I have no choice but to keep moving forward - blindly.  Even the doctors have been very careful as they move forward.

Spoke to Dr. Thacker, surgical oncologist.  She said biopsy and CT results in full are still pending, but the first look at the CT gives enough information that they need MORE information before proceeding with treatment.  She says the mass is “rectosigmoid”, meaning it appears to be right at the junction of the sigmoid colon and the rectum.  Her diagram on the whiteboard was very simple and very dismaying.  This means more testing - probing really - is necessary to determine exact location, etc.  Because if the tumor is located beyond 15 cm in, we go directly to surgery.  If it is located before 15cm, and encroaches on rectal tissue, then oral chemo and radiation.  The oral chemo is designed to make the tumor susceptible to radiation, which is to shrink the tumor.  And THEN surgery.

The surgery went well.  I have a few new scars for it and some lingering problems with bowel movements that I won’t go into here.  Trust me, you don’t want anybody cutting parts of your colon out.  

Fortunately, I’m not alone.  I have April and my family.  I have excellent doctors.  I have my belief I can overcome anything.  And cancer is a very different beast than lung disease or transplant status. Different enough that everybody knows what cancer is, the seriousness of it, and entire hospitals are built to fight it. 

If there’s one observation I can make so far, it’s that while “I need a transplant” or “I’m immunosuppressed” draws a blank with some people or elicits a confused reaction, “I have cancer” immediately meets with sympathy and understanding.  EVERYBODY has dealt with cancer, if not in themselves then in a close relative.  So I’m not surprised I’m getting good support from FB.  

But what does surprise me is the change in how I’m treated by medical professionals.  Until last Friday, I had the impression my “little” problems - hypertension and kidney disease - were boring, run-of-the-mill, and slightly annoying for the medical professionals taking care of me.  But a diagnosis of cancer? That changes things.  Tanya the PA on 7800, for instance, did a 180 from stony-faced, hella-competent professional, to compassionate, hella-competent, personable medical ally.  She told me a bit about her sister’s permanent colostomy and her own fight against breast cancer and mothers who are more of a complication than a help (in these situations).  We had a couple long, good conversations before my last discharge.  I hope I can count on her this weekend to help keep all teams coordinated.  I’m not going to have the humour or patience to deal with people who won’t listen to me or to each other.

Cancer has already changed me permanently - physically, chemically, mentally, socially. Cancer is a veneer that changes how people see you.  And, I suspect, changes it just as permanently.  I know I view my acquaintances who have survived cancer with more awe than I did before, like Susan Hilferty.  So now I’ll be “that” guy - all over again.  If it's pity, my friends can save it.  I only need their understanding that I have a new normal, even farther from center than before. 

This post has been extremely difficult to write.  I’ve been mulling over what I wanted to say for over two months.  But tomorrow begins a new phase of treatment - chemotherapy - and I felt I needed to get down on paper what has been stewing in my brain so far.  I realize that I have dodged bullets at every turn.  The tumor was located just far enough in to treat primarily with surgery, immediately.  Chemo is up to bat as cleanup; primarily because the tumor was Stage III, I had a small amount of metastasis, and I am, after all, immunosuppressed.  Things could have been a whole lot worse and for that I am thankful. 

 Things may still go sideways, but for now, I’m OK. What I keep coming back to is my ability to cope.  These last two months, I have repeatedly reminded MYSELF that I’ll handle this thing like I always have: calmly, with deliberation, and with dignity.