Sarcoma Treatment Journal Entry Eight

Kris and I drove down to Duke Tuesday night for pre-op appointments Wednesday. As if you didn’t know getting sick is a full time job. The freakin’ paper work and if I have my blood pressure checked one more time I’m gonna scream. At least the book I’m reading while I’m waiting to subject myself to all of this is finally starting to get good. Nothing like being at a cancer center for eight hours of soul crushing anguish as the children go by in wheel chairs, the patients with strange growths on their faces and incisions in their heads walk by or sit idly awaiting their fate, but hey at least the carpets are nice. And oh the soul affirming poetry they frame and post on the wall miss the mark by a wide margin and reek of morbidity but then again that’s just me slapping my forehead….uplifting is in the eyes of the maudlin. Take my blood, take my money, take my signature, give me the worst case scenario you know because of litigation and get me the hell out of here. All I could think of going through pre-op and admission was my cat when I took her to the vet. Looking for a way out Sylvia jumped into a window and tried to make a break for it – smart cat – she pressed up against the screen just as hard as her little body would let her. Beyond that screen was fresh air and an open field on a beautiful sunlit day. Who could blame her I know how she feels.


That’s my girl giving it her all – happy cat indeed!

So four hours of surgery, two surgeons, several scars, pig skin or some strangers cadaver skin, three nights in the hospital followed by 6 weeks of recovery which might include self-injections – you know just for fun, and oh yeah there’s a 50/50 chance your wound won’t heal and you’ll need a third surgery. Apparently the irradiated tissues on the inside of my body may not bind back together. There it all is down and dirty folks in case you ever have to go through it and some of you have.

Sorry no happy rah, rah talk about how everything is going to be all right – its surgery time and I’m not so happy rah, rah about having to go under and we might knock your teeth out or give you brain damage – you know the legal folks make us say that – but god forbid you’re the .0001% that this happens to and you wonder why people worry – because it is a big deal.

I’m actually in a better frame of mind than all of the above but that’s what you go through folks and there is no reason to pretend otherwise. You all better keep in touch with Kristine because she won’t have anybody at the hospital with her and if you don’t appreciate what she will be going through then dig around a little deeper in the back of your closet to find your heart.

The Rolling Hills of the Piedmont are simply beautiful – if you find out I didn’t make it to Duke I’ve jumped out of the car and will be running through them.


Paul

Sarcoma Treatment Journal Entry Nine

Well its been a whirlwind trip but Kris and I are back home now. Most of you we have talked to one on one and I’m a little out of gas right now so its going to just be a short hello. There was a range of options from worst case scenario to best case scenario and in the surgeons own words – we got the best case scenario. Pathology taken during surgery showed negative margins. We are awaiting more in depth pathology results from the lab to come in next week. Negative margins are good. You do not want positive margins that means they found cancer cells. I was in surgery for two and a half hours and then the plastic guys closed me up in a half hour – three hours total! One surgeon said point blank we did not find any cancer….so I said “keep on truckin” and he smiled and said keep on trukin – it was a moment at 6am with just me and him in the room. Thanks Patrick I’ve got the scar to prove you looked.

We are fine, in our happy home. Kris is taking great care of me and that can not be overstated. The sun is shinning the birds are singing and as soon as I can get behind the wheel of a car I’m headed for the boardwalk. I’ve already ditched the walker they sent me home with and I am using a cane quite dapper in my pajama pants and black cane with gold trim. I also got one of those tall commodes – you know “toilet on a stand” and ditched that thing. I loved it the first few days in the hospital – its a long way down with a scar in your abdomen but they are really confining, They slap your legs together and leave no room for Mr. Happy definitely not what I’m used too and shortly thereafter that thing was hauled out of the powder room in an act of defiance and everything cut loose after that.

Speaking of cutting loose the hardest part for me is taking it easy – it was major surgery so I have to force myself to hit the sofa and lay down – fortunately there is Oxycodone for that……space the final frontier. Twilightzone dreams and the space time continuum has been shattered, Next week we go back to Duke to have stitches and the blood bag removed. I’m carrying a drainage pouch around with me. Its fun dragging your bodily fluids around – especially when all the chords get tangled up as your hospital gown gets caught in something. I do not miss my catheter. Great, great care from the Duke team but there were a few fumbles a long the way – you have to be your own patient advocate people – hospitals are health care factories. But great people doing great work gets overrun by the crush of business and lack of time. Nurses need more pay!!!

Thank you one and all for thinking, praying and meditating on us….

Paul

Sarcoma Treatment Journal Entry Ten

I hope by now some of you will see that with humor, defiance, fight, education and taking it one step at a time you too can get through this process.  Dealing with concerned families let alone the paper work is a full time job so don’t be afraid to push back even on the well meaning if they are draining you emotionally or physically or just saying the wrong damn thing.  Call them out educate them and the process will go better.  Be proactive and not passive and by all means get to a sarcoma specialist someone who has performed hundreds of these type of operations.  Through plain old trial and error they know how far to cut to get negative margins.

I faced one thing at a time whether it was the first MRI’s or CT Scan’s or the 5 weeks of radiation I ticked each event off one day at a time and worried about the next step, day when I got to it.  I handled it in small chunks right down to the self injections when I got home after surgery to combat blood clots.  There were plenty of tears going into surgery but the staff at Duke were great and there were tears after it was all over.  I also was watched by hawks literally as they perched outside my hospital window.  The entire staff on the floor came into see this phenomenon and to take pictures they had never seen it before and stated that they had worked there a long time.  And on check out day the hawks were gone.  I kid you not!  My animal spirit, god whatever you want to call it was sending me a message.  I received it and felt reassured. My life and soul  (just like yours) is being watched like a hawk by angels who have gone on before and the creative spirit of all that is mother nature herself.

It’s okay to feel the whole range of emotions from victim, to fighter, to the why me and also to gain perspective from those around you.  Trust your instinct.  Talk to the other patients in the waiting room you’ll learn something and at least be conversing with someone standing in your own shoes.  I can’t tell you how important that is.

To this day I’m convinced I sprayed myself with weed killer- wind drift took it right up my shorts on a hot summer day, sweating, working in the yard for hours at a time and commando style my skin and groin were unprotected.  The mayo clinic link lists herbicide as one of the causes of sarcoma so please learn from my mistake.  Where underwear and long pants when applying that stuff or go and stay organic.  It was a rainy summer and I got lazy and bought roundup for the first time in five years.  Trust me I’m back to using vinegar for weed killing it works but you do have to apply it more frequently.

The risks in being lazy are too great and I’ve learned my lesson.  I’m one of the lucky ones and usually they don’t post on line.  Why would they – relieved they are going on with their business.  Most of the posting on line is from people who are just slammed, worst case scenario remember sarcoma comes in at least fifty known varieties.  Its an attack on the extremities and in the old days led to amputation of legs and arms.  We’ve come a long way and we will travel even farther.  Be your own patient advocate.  I insisted that only the most experienced doctors work on me even for stitch removal.  You have rights as a patient so push back don’t let residents and students put in the epidurals.  You want the attending physician to do it and don’t focus on worst case scenario the surgeons are just giving you all the scenarios so when you wake up you are not horrified or litigious.  Get the consent forms signed ahead of time.  Nothing is more gruesome rolling into surgery while still going over a consent form that lays out all the possibilities that could go wrong.  We know we might die in surgery right before going in is a helluva time to be reminded.

In the end if you want to write back or leave a comment please do and I’ll answer it as soon as it comes up in my inbox.  Remember its not all worst case scenario.  I was given a 50/50 chance that I would have complications with even my wound healing….didn’t happen.

And remember the stats they give you are based on everyone not the subset that is uniquely you.  If you see a lump anywhere on your body get it looked at and demand an ultra sound and MRI and get several opinions.  Be willing to see other doctors if yours pushes back on you or won’t perform the procedures.  Good luck, be strong, and you can get through this ordeal.  Cancer is slowly evolving into a manageable disease.  Don’t get overwhelmed by thinking too long term take it one step, one day at a time.  For the rest of my life I’ll have CT Scans and MRI’s and believe it or not I’m looking forward to it.  If those little nasties make a come back I want to know as soon as possible and take care of the situation promptly and properly.
Here’s the original links that proved helpful and informative for me:

http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601
http://sarcomaalliance.org/sarcoma-centers/

And here is my final journal entry.  I hope somehow sharing my journey will help with yours.
Paul
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Good morning :)
As some of you know we just heard last night that the final pathology report has come back negative. It’s counter intuitive but negative is good in medical language speak. I have clean non-diseased wide margins in the tissue they removed from my body. They did find left over low grade tumor tissue in what they cut out of me called well differentiated but the doctor referred to that as almost being benign – no contamination in the lymph nodes and they did not find the higher grade tumor tissue called De-differentiated that they were worried about and had turned up in a prior pathology report from my hernia surgery in November.
I have suspected all along that those little nasties came out with and in the hernia sac. They found some irradiated tissue as well in what they removed which makes sense after 5 weeks of radiation but on the whole just a little debris mixed in with mostly healthy tissue. The tumor bed is now all cleaned out with wide clear margins on the inside of me – so for that we are all very grateful. There is to be no more radiation or surgery just regular screenings with MRI and CT Scans! So I’ve made it to the observation stage and pray I never have to go through this again – statistically for all patients with this disease there’s a 90% chance it won’t reoccur if you go to a Sarcoma Center.

Later today we head down to Duke to have stitches and the blood bag removed. We’ll go over the path report in greater detail as well. The stitches coming out is a big deal – like pulling up railroad track. I’m hoping for sedation and lots of it! I have a lot of swelling and it will probably be the end of the month before I even think about driving to the office. A shower would be nice.

Whatever transpires my perspective has only been amplified by this experience – quality of life is what matters most and I will preserve and enhance my quality of life each and every day come hell of high water.
Many, many heartfelt thanks and love for all the prayers, worry and positive thoughts…..keep the faith and love each other.
Paul