Houston All Set Up, Now Just Another Week of Waiting

So appointments with the recommended oncologist (including a full days for or blood work, CT scans, bones scans and a scan or two I have have forgotten) as well as the MD Anderson appointment are set.  Derrell will ride over with me and, as usual, be my rock.  I love this human being with all my heart and am humbled at how lucky I am to have him walk through my door 2 years and 10 months ago.

I still find myself bursting into tears at odd times (using the restroom, stopped at a stop light, etc.).  Normal I guess.  I also find myself achey and fatigued most of the days recently.  Not just "The 9 hours sleep I got wasn't enough" tired but just flat out fatigued.  This shit scares me.  My reading is that with metastasized PC, the average life expectancy with good treatment, good diet,etc is 5-10 years.  I'd hope for far more than 62 and with good quality.

One day at a time.

The Wall and the Biggest Question of My Life

I'm in my 4th day back at work and have hit the proverbial wall.  I had to leave mid day yesterday because my energy just flat zapped out. One of the surgeons had warned of this and they were so right.   Kinda hard to have your chest cavity and lungs assaulted and not have some throwback by the body.  Pain, fatigue, etc.  But this too shall pass.

Have an appointment 4/10/13 with an oncologist in Houston who specializes in these odd cases as well as an upcoming appointment with a specialist at MD Anderson, so the hunt for the right medical guidance does on.

Finally, earlier this week, I asked my partner of almost 3 years if he'd do me the honor of making our relationship legal in a place where that is possible. He said yes!  No equivocation, no hesitation, simply a "Yes, of course!"  Words which will ring in my ears until they can no longer can perceive sound.

In some ways I've not been too luck recently; in others, I'm the luckiest guy I can imagine.

Almost Free......and Then.......

I'm waiting in my hotel, errr, hospital room for the Internal Medicine Doc to come by and discharge me.  The surgeon has been by and pulled the 12" plastic chest tube (I highly recommend 2mg Dilaudid IV about 10 mins prior to such an event should you ever be unfortunate enough to have one.....takes the edge off a bit), the anesthesiologist has removed the pain catheter/epidural tube and the only foreign object still stuck in MY body is the IV which we are leaving in until I am officially DC'd.  My wonderful, strong, loving partner, Derrell (more on his steadfast support during the last 3 weeks in another post) has taken a trip home with most of what we amassed here in the last 3 weeks and then is bringing my freshly washed car to pick me up (he knows I'm a little anal about my car being dirty and him insisting on washing it was something to be expected....because he just loves me like that).  We'll make a short stop for a haircut and then go home and lay down to nap in our bed.  Then in a few days, I'll need to make some decisions on what route to take with this tumor and the associated metastasized cells which was described by the oncologist again this morning has "highly aggressive and at a rate" he'd not seen in someone my age before (i.e. no frame of reference).

Yup, I think we're gonna need a nap.

An Answer I Didn’t Want

The oncologist came in this morning with the pathology results.  The cancer in my lungs is indeed metastasized from the prostate.  His commentary was he’d only seen that in a couple of elderly men…..indeed extremely very, very, very rare.  This leaves me with difficult decisions to make in terms of treatment.  I’m vacillating between  being stoic and accepting what I’m facing and busting out into oceans of tears.  Being a little numb helps at the moment.

 More to follow when I’ve processed things.  Thanks to all for the support and love.

A Little Ole Lung Biopsy - No Big Deal - Unless It Is, and Then It Really Is - Pt 2

As I woke up in the Recovery Room, I immediately knew something had gone wrong.  I was in severe pain in my right chest.  A nurse was standing next to my bed and through the receding sedation haze, I understood her to say my right lung had collapsed and they had not gotten the tissue they needed. She went on to say what I was getting for pain control which was a laundry list of Schedule II pharmaceuticals.  I was eventually moved to my room where I had a sleepless night as pain management doctors played with meds to determine what might give me the best relief and leave me conscious.. The next day, an associate of Lord WonderKid’s was the one who came by to inspect the drainage tube and while he was a bit more available than the Gutless Surgeon, he could provide no insight as to what happened to cause my right lung to collapse. 

The drainage tube came out on Friday.  It was a procedure that the anesthesiologists suggested strongly that about 10 minutes before the removal, I have a 2mg Dilauded “push” in my IV as it would “make it a lot easier” on me.  Man, was that an understatement. Pulling plastic tubes out of the chest cavity rates right up there on the pain scale, trust me and the anesthesia guys and gals on this folks. 

In discussions with both the oncologist and Dr, Bob, we all agreed that it was vital to know what the nodules were…..benign? Cancerous? If cancerous, was it metastasized prostate cancer or some other cancer ? (both my parents smoked in the house and cars when I was growing up, so something generated by 2^nd hand smoke is a possibility).  A different thoracic surgical group was contacted about doing what is known was an “open biopsy” where 2 holes are opened between ribs and “stretched” a bit to allow for a camera and then a cutting device to be slipped in and the tissue cut and removed.  This was a it different from the previous two due to the extra holes but also because the lung would need to be collapsed on purpose so it was still and not a moving target which meant that recovery would once again require the 12” drainage tube to be in place for for 2-3 days after the procedure. That makes for a total of 3 cuts on this one in addition to the still healing would from the Gutless Surgeon’s attempt. 

The different group of surgeons was hired and I was fortunate enough to draw a Dr. Kirkland who came to my room when he said he would to discuss the procedure and answer any questions I might have.  Dr. Kirkland was personable, punctual, respectful, quite knowledgeable and also honest enough to tell me that during recovery I’d feel like I‘d been “in a knife fight and lost. He also said the anesthesia group would double their efforts to ensure my recovery pain was kept to a minimum.  I felt this was someone I could trust to cut on my body. 

The surgery was completed yesterday and it was immediately confirmed that the nodules were not benign but it would be up to 48 hours before we knew what type of cancer I’d managed to get in my lungs.  He was correct about the additional pain but was also correct about the anesthesia groups doubled up efforts to keep me comfortable. I’m on a variety of narcotics, both oral and IV as well as NSAIDs, Lyrica and anti anxiety drugs. Most interestingly, while I was in the recovery room and they were struggling to keep my pain controlled, they suggested an epidural catheter that would deliver a constant dose of a Novocain like (what ya get at the dentist’s office) drug to the spinal column above the level of the incisions. They warned that they would need to flip me over to insert the catheter and that even though they would drug me up as much as they could, it would be a rough experience.  Exercising exceptional wisdom considering the state I was in, I agreed and they were right about the trauma of being turned over with a chest tube sticking out of my body.  But they were also right about the huge added benefits of this additional, non-narcotic medication.  I can’t speak highly enough of these folks. 

I was taken back to my room and of all things, Lord Douche Bag waltzed into my room as if all was grand. Acting like Little Mary Sunshine, he seemed rather taken aback when I assured him there was indeed a problem between him and me. When I explained the problem was the lack of preop counseling and zero post op contact, which I found completely unacceptable considering the slight complication of a collapsed lung.  He then proceeded to throw the anesthesia staff under the bus by blaming his lack of contact with me on them sedating me before he got to the OR.  As I have no respect for people that cant own their mistakes and run coworkers down in trying to explain their own misdeeds, I invited him to promptly leave my room. 

That takes us up to tonight, Tuesday, March 18, 2014 at 11:50 pm.  I’ve just pressed my self administered IV dose of pain med and will buzz the nurse for a sleeping pill and I’m hopeful

I’ll sleep more tonight than last night’s 1.5 hours.  I’ll need the rest both to help heal the physical wounds of the last week but also to prepare mentally to hear what is in my lungs, news I will likely get tomorrow.  News that will give more precise insight as to what the future holds..  News that may tell me about my longevity. Tomorrow is a pretty big deal. Goodnight folks

A Little Ole Lung Biopsy - No Big Deal - Unless It Is, and Then It Really Is - Pt 1

King, Lord, Dr. Whizkid made contact with me via his rather surly assistant who advised me that Dr. WK felt he could safely reach one of the nodules. Biopsy scheduled for Weds, March 12 at Seton Hospital. I arrived at 930am with Derrell as my chaperone, support, guide, advocate, cheerleader and love of my life.  After signing away a few hundred dollars as well as the obligatory “consent to cut on ya” forms, I was given the traditional paperthin, “you may or may not wake up again” gown and asked to lose everything else and wear the gown instead. 

The RN readied to start the IV and lustily eyed the top of my hand.  I advised that I didn’t mind IVs usually as long as they weren’t in the hand or crook of my elbow. She responded that as they’d had me fast, including liquids, my veins weren’t very easy to see, including the one we both agreed we saw running across the top of my meaty forearm. Losing my usual assertive self, I agreed to the top of the right hand. Within 2 very painful minutes, she had blown the insertion leaving a nasty, bloody, painful bruise. She then went for the crook while my usual, assertive self remained in hiding. A rough, clumsy 5 minutes later, she had the IV in, taped on in a way that would make any 2^nd grade art teacher proud, I’m sure.

Assertive self was still on a half price cruise somewhere as I sat in the glassed in waiting area and watched Lord WhizKid walk back and forth past my glass cage, never once stopping in to see how I was or if I had any questions, much less smiling, waving nodding or even looking in my direction. I began to wonder if I was indeed really one of his patients. Finally, around 1pm (that’s three and a half hours of what would have been anxiety ridden reclining save for the anesthesiologist who DID act in a professional manner and meet with me shortly after my arrival and dumped a couple of syringe’s worth of benzodiazepines into the business end of the 2^nd grade art project IV), I was wheeled to the procedure room and was introduced to everyone but Sir WhizKid who was not present.  I was asked to begin counting backward from a long since forgotten number and I was immediately transported into The Land of Safety for Those About to Be Sliced and Diced.

 

It was after that when things got ugly.

Heavy decisions to be made.

The reality of what I may be facing hit hard today after seeing Dr. Bob this morning. If the cancer in my lungs is indeed the metastasized particles from my prostate, I have two choices:

 

1)      Do nothing and face an almost certain painful death in 1-2 years

 

Or

 

2)      Begin androgen deprivation “therapy” which basically is chemical castration. The joyous side effects of this include:

 

§  Reduced or absent libido (sexual desire)

§  Impotence (erectile dysfunction)

§  Shrinking of testicles and penis

§  Hot flashes, which may get better or even go away with time

§  Breast tenderness and growth of breast tissue

§  Osteoporosis (bone thinning), which can lead to broken bones

§  Anemia (low red blood cell counts)

§  Decreased mental sharpness

§  Loss of muscle mass

§  Weight gain

§  Fatigue

§  Increased cholesterol

§  Depression 

Hell of a choice.  I never thought I’d be wishing for, indeed praying for, 2 types of cancer to be present in my body, but damned if I’m not! The stress of the last 3 months has left me literally shaking at times, unable to focus, in constant “fight or flight” syndrome (if not for anti-anxiety meds, I shudder to think what kind of mental shape I’d be in right now), sweating through anti-perspirent, snapping at people I normally wouldn’t. I could go on and on. 

I can’t imagine that my only choice to stay alive may be the total emasculatization of myself. I’d already started to begun to realize I might have to have a radical prostatectomy and felt like I could work through those side effects.  But even with that I’d still have a libido, a penis that looked normal, testicles that looked like a man’s testicles, no breasts other than those developed through working out (i.e. pectoral muscles). I wouldn’t have hot flashes, or anemia.

I’m overwhelmed by having to possibly make such a decision.  I like being a man, I like having functioning man parts, I don’t want to have to turn myself into a menopausal woman to live.

The decisions are huge and I’m stressed, overwhelmed by them and wishing I could curl up in a ball and cry till it’s all over.

Whizkid Contact – Finally!

So it looks like the pulmonary whizkid has decided that he feels he can get close enough to grab some of the lesions in the lungs that we are hoping and praying are something OTHER than the PC.  Scheduler has to get back to me but says it will be first part of next week.  

Biopsy Pathology - Just the Facts Ma'am

For you geeks that understand the pathology of carcinomas, here are my numbers:

Prostatic Adenocarcinoma, Acinar Type
Gleason 8 (4+4)
Lymphovascular Invasion is present
Perineural Invasion is present

PSA:
11/19/2011 - 1.45
4/1/2013 -     2.45
11/19/2013 - 4.91
1/31/2015 -   5.20

The MRI notes were:  Bi-RADS Category 4, suspicious.  Findings are suspicious for a fairly extensive tumor throughout the gland with extracapsular extension of the disease on the right. The tumor also abuts the right neurovascular bundle.

For those of you who aren't pathology geeks, this means it's large, aggressive, isn't confined to the gland and is right up against the nerves that control erectile function on one side.  You can also note the rise in PSA from the end of 2011-2014.

Hurry Up and Wait......a Little Bit More

My Pulmonary Whizkid Dr. didn't get a chance to look at my CTs and won't before tomorrow so I just need to wait.  Yup. Wait.

Gratitude

Having pretty well caught up on much needed post hospital stay rest and as a cold front blew in this AM dropping the temps by 20+  degrees, seems like a good time to just check in and express my gratitude for all the love and support I've gotten from friends, coworkers and family.  The outpouring of love has touched me deeply  and reminded me that I seem to have really treated some folks right along the way.   It can leave a guy speechless when you get emails from coworkers that aren't just simple,"Get Well" notes but are in depth communication on how much I mean to the person and the impact I've had on their growth at the company.  Makes my heart smile.

I find out tomorrow morning if the pulmonary guy can work with my airways to get a biopsy needle close enough to the .8mm lesions so it can be biopsied.  Crucial to find out if it's the same cancer as that is in my prostate or something unrelated. Fingers crossed.