Sarcoma Help – A Primer for Patients, Friends and Family

Chances are if you are here you have received the news that you have Sarcoma.  Right off the bat you need to know what it is and below are several links that are very informative.  I’m posting them right up front because most people here looking at this post are scared to death and need the info right away.  After you have checked out the links come back because what follows is an open, honest journey of one mans experience with liposarcoma.

Cancer is a scary word but it is just a word.  There are over fifty varieties of sarcoma some are down right nasty others like liposarcoma have a low rate of recurrence if properly removed by a sarcoma specialist.  Your local general surgeon does not have the experience in treating the disease.  Getting to a sarcoma center is imperative in lowering your risk for recurrence.

You should know Sarcoma doesn’t act like a typical carcinoma and if you are looking for a little good news chemotherapy is useless in treating Sarcoma.  Sarcoma is treated with surgery to cut the bad cells out.  Cancer/Sarcoma are just cells that have been infected by viruses or chemical exposure to the point where their basic normal function is damaged and they do not know how to shut themselves off.  We have millions of cells dying off and recreating in our body every day from hair growth to bone regeneration our cells are constantly dying off and regenerating.  When they can’t go through their normal life-cycle and die off its up to modern medicine to intervene and surgically remove them and or kill them off with radiation or dose them with chemotherapy.  These are all harsh treatments but undying cells creating massive tumors interfering with your bodies normal functioning organs by their invasion or malignancy is worse.

That’s is all a tumor is that’s why if you catch the disease early enough you can scoop the offending cells out before they spread and do serious damage to your lungs, liver, pancreas, kidney or brain.

Here are the links – get up to speed – if you want to fell better read them – they’ll answer a lot of questions for you – knowledge is power.  And then come back and read my daily journal it will help in knowing what you or a loved one is about to confront.  The journal will be posted sequentially on the front page and under the heading Sarcoma.  Good luck!  With the proper care cancer is not what it used to be ( a death sentence) most cancers these days are highly curative.  There are a lot of people doing a lot of good work in this field.  There is even a dye in clinical trials that will illuminate the cancerous cells for the doctors to see.  Its only in phase one of it’s clinical trials but it would be a game changer if proven affective.

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

Sarcoma Treatment Journal Entry One

Before we get to the journals a little background.  I noticed something in my scrotum last year around this time and went to a urologist.  He determined I had a hernia.  However the urologist did not perform an ultrasound or MRI and sent me on my way to a hernia specialist.  Do not make the same mistake.  Get the MRI and Ultrasound if you notice lumps no matter what they tell you.  Insist on it you have to be your own patient advocate.  And get ready for paper work from the insurance companies and healthcare providers.  Get your bills all on a low monthly payment plan so your household and regular life aren’t up-heaved by $60,000 dollar radiation bills.  If you have good insurance you’ll have a cap on what you pay a year so do not get blown away by the hospital bills.  You are responsible only for your yearly cap in some cases as little as three grand.  And if you don’t have insurance get some today!

The first order of business was to get my imediate family educated I went to Florida to get a no mesh hernia repair.  The doctor down there during the procedure discovered a nasty tumor and excised it out of my scrotum and sent all the tissue off to Miami to a specialist who determined I had a well differentiated lipo sarcoma with DE-differnetiated satellites in the hernia sac.  Scary stuff, scary words until you consult Dr. Google and find out well differentiated is a low grade tumor almost benign and that the DE-differentiated is the maturation into a higher grade tumor.  Its important to know what you are up against.

Here’s  my first email missive off to my immediate family:
___________________________________________________

Brothers and Sister,
There’s a link below with a lot of background information. Keep in mind the tumor is out I just need to get imaged, and clean out any residual disease the hernia specialist may have left behind. I’m confident I’m pretty clean because Dr. Tomas (the hernia surgeon) also works with lumpectomies and other cancer related diseases. So it’s not like he had an untrained eye on me.

I’ve also attached my pathology report if you want to look up terms. Please keep that private and confidential in the vault that’s not for anybody else’s eyes but you three. I’m taking a huge leap of faith here in sending it to you three so please don’t share that path report with any other doctors, friends or god forbid facebook. I’m just trying to get the big three (that’s you guys) up to date. And I don’t think it would be wise to share it with Mimi or Poppie either. All those unfamiliar terms are shocking and grim. For instance the stage number refers to size not the malignancy potential as in other cancers so being unfamiliar with the terms can lead to jumps of conclusions.

Essentially the area of concern is from just below my “deep” ring in the inguinal canal and my right scrotum (link below). It was a low grade tumor not attached to anything but it spun off some nastier nodules in the hernia sac three to be exact but they are out as well. No hemorrhage and necrosis is a good thing if you read the report.

The Mayo clinic link below is also a quick concise primer that you should read (ten minutes). I’m trying to keep mom and dad updated daily, and remember the best way you can help is to just listen. If you want a daily update call them or each other. The phones been ringing off the hook with both families calling and while everyone is well meaning it’s still grim reaperish like the guy in the first poltergeist movie at the screen door (your all gonna die in there). He was awesome wasn’t he?!!?



If you don’t like something I’ve said just let me vent, and don’t conveniently run for the exit like you have been so offended. I mean if you call and get me talking about this shit the least you can do is hear me out and if you don’t like it tough.

Now I’m going to be fine and have a great positive attitude and the power of the mind and the power of words should never be underestimated. So guard your thoughts, and guard your words or you might manifest just exactly what you don’t want to happen not only with me but in your own lives. If you don’t believe that tough shit I do so you need to respect that.

Stop projecting on me like I’m some idiot who doesn’t know the score. Do I call you up and rag on you about what you are supposed to be doing or not doing no I don’t – and we all have areas we can improve in or do better want me to list them…you don’t need me too right because you know yourself and you are adults capable of making your own decisions and well informed (me too).

Anyway that’s a vent respect it and let it go. Okay, so that’s that lets all just act normal and not wig out. I’ll try to send out emails from time to time to keep you posted.

The latest: My chance for re-occurrence is lower if a high volume facility does the work.  I went to a specialist with my hernia and you bet I’m going to see the specialist for the sarcoma. As far as how I got this I may never know but the first thing the doctor asked me is where do you carry your phone. Any possible agent I’m moving including computer towers I have been sitting next to for the past twenty years and herbicides on my lawn the neighbors. All the toxins are out of the house and Kris can handle the chlorides for the pool. That’s it for now.

Alright I’m out – here are the links – get up to speed – if you want to make me happy or fell better read them – they’ll answer a lot of questions for you – knowledge is power.

Paul
http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601
http://sarcomaalliance.org/sarcoma-centers/
http://www.anatomy.yalemedicine.org/Lab_10/m3.php

Sarcoma Treatment Journal Entry Two

There were other emails of a much more personal nature that I’ve decided to skip but the crux of the situation is that for Sarcoma the clinical results and metrics show your chances of recurrence diminish greatly if you have radiation therapy first before having the surgery to cut out the tumor or suspicious mass.  What was causing my doctors down at the Duke Sarcoma Center concern was the scar tissue from the hernia surgery.  They couldn’t determine without cutting me open whether it was just a hematoma (black and blue mark) scar tissue or a tumor the hernia surgeon left behind.  I assured them the Hernia surgeon wouldn’t leave one tumor behind while taking another.  And in an example of patient advocacy insisted that the specialist at Duke talk to the Hernia surgeon in Florida (they did) because he was boots on the ground.  Once they talked to each other the Duke specialist dialed down their alarm and basically said we don’t know what it is but we are cutting it out of you and I now have the scar to prove it!

Journal Entry Two:
_______________________________
Hello all,
Just a quick email update we are approaching the end of radiation treatment. I am not going to miss getting zapped every day as I am now slightly sun burned in a very sensitive area….yowie zowie! The final treatment is scheduled for Tuesday the 11th. One of the weird peculiar to me side affects is I come out of radiation just ready for chow. I had to have a couple of cops and a homeless guy push me out of a snow bank as I barreled into my local Wawa for a classic turkey hoagie extra provolone oil and mayo and bring on the Fritos and chocolate milk. Think Animal House and Flounders car crashing into the front yard. Actually I could use a hoagie right now and yes its 10:45 am. That’s how a true Philadelphian combats calamity – take two hoagies and call me in the morning.

We are now waiting to hear from Duke about logistics. There is another round of CT Scans and MRI and then surgery. We are looking forward to getting this behind us and having a great summer! Amy thank you for the gifts in the mail we used that money on a night out and of course the scenic calendar is beautiful. Jay it was great talking to you as usual and I’m expecting those old Kingston Road garage photos or at least one of them in the mail – so start digging brother and I hope they are in the original frames as well. That will help keep the home fires burning.

As you all know I’m not the only one dealing with this screwed up industrial assault on our bodies there are others in our own families and extended families so keep everyone in your heart. And just so you know some of us don’t like playing the victim or treated like victims so keep a stiff upper lip and go into the corners hard elbows up.

One final word that cancer ad during the super bowl was targeted at those without cancer because those of us dealing with it don’t want that weak, wimpy victim attitude directed at us. I was horrified at that add. One big middle finger to cancer is the attitude you need to beat it – at least that’s the approach I’m taking. Feeling sorry for yourself isn’t going to get it done (with anything). So don’t bother worrying or feeling sorry or milking the drama its counter productive and just flat out annoying to deal with – treat those in your life with cancer the same as before. I’ve heard this from all types of people with disabilities and disease. So when you think of me laugh hard know I’m still enjoying life from dawn to dusk and back again in all its subtle wonder both seen and unseen as I always have and get tough and have a hoagie!

Chow hard and keep the faith!

Paul

Sarcoma Treatment Journal Entry Three

It’s going to be a busy week as I wrap up the radiation. I am in the middle of the 5th week but I don’t want to sugar coat it I am definitely feeling side affects. The pelvic region has some very sensitive areas and folds. This is not diaper rash boys and girls more like Hiroshima for the groin the surface of Mercury it only hurts when I walk, sit down, or move.

My total radiation dosage over the 5 weeks is 50 gray. Here’s an article from Wikipedia that describes radiation therapy http://en.wikipedia.org/wiki/Radiation_therapy.

Wednesday morning I’m hopefully having another round of CT Scans (just the chest this time) without contrast and an MRI of the Pelvis without and with contrast. I don’t have to drink any nasty vanilla flavored barium. I did originally. It’s nothing you voluntarily would ever want to do and it pissed me off having to do it. The contrast for the MRI is delivered intravenously its big time fun when you can feel your kidney tweak as the dye goes through your body. Then on Wednesday afternoon around 3pm or sooner if possible – we are headed back down to Duke. Hopefully we’ll get on the roads before they become icy or that storm that is forecasted takes a turn or never materializes. Our appointment at Duke is for 11:15 am on Thursday. At that point we should know when surgery is how long it will be, and how long I will be in the hospital. Hopefully I’ll show clear images from the Scan and MRI and the surgery won’t be too invasive.

That’s it for now,

Paul

Sarcoma Treatment Journal Entry Four

Well the trip down to Duke was eventful. First off the place looked like the mall on Black Friday. The parking attendant warned us that the lot was full and we would never find a space. I found one right away. It was for valet parking only. Hey I know these guys a couple dollars here are my keys and I’m on my way. Nothing doing the moron’s handling the valet parking in the garage must have been on their cigarette break. So right off the bat I told them they were a bunch of hicks for not working with me and reversed up through a one way alley. Here’s a little Philly for ya fellahs. I found another spot immediately. Kris used to get upset with me now she tells me to go faster and run the barricades

Imagine a crowded airport terminal with a multitude of cancelled flights and that’s what this scene looked like in the parking garage and the medical center. And let me tell you Duke Medical is as big as an airport and that’s what it looked like. Kris heard one woman say they had been waiting four (4) hours. These are cancer patients being herded like cattle. Fortunately Kris and I got there early and were called for our appointment right on time. We did a bit of sitting around. But what I told Kris and firmly believe is that the Doctors should not rush with any patient under any circumstance so we did not get impatient. These other people are sick as well and some horribly so. It was a sad wild scene.

We finally got home around 8pm. We stopped at Bull City Burger and Brewery http://bullcityburgerandbrewery.com/Bull_City_Burger_and_Brewery/Home.html for a late lunch and headed out of town by 4:30pm.

It was a long long day and Kris picked up the driving duties once we got into Virginia. I was determined to leave North Carolina on my own terms! But I did suffer and threw myself into the tub (my new best friend) as soon as we got home.

You’re never in a good mood when you are walking like Walter Brennan, the doctor tells you how long the incision will be, your backside is on fire and you have to use the rest stops.

But right now I have six weeks to decompress and process the next procedure. I go in for a pre-op on March 19th and surgery March 28th. I’ll be in the hospital for at least two nights possibly three. They reserved a private room for me for five nights. They reassured me that five nights was just precautionary. They didn’t want to have to scramble to find a room if I had to stay longer. The recovery at home could be up to six weeks but that’s worst case scenario and the Duke surgeon stopped referring to the unknown image on the MRI as a tumor and referred to it as scar tissue or a hematoma (fancy name for a bruise) http://en.wikipedia.org/wiki/Hematoma.

Four words you never want to hear your physician say, “Your scrotum is pealing”.

But I feel great and my humor is intact. Once you accept this is going to happen and that there is no exit door or escape hatch (I keep looking for one while soaking in the tub) and start adding up all the positives it becomes easier to deal with. Although I have been thinking about blowing it all off, cashing out, selling the house, and going on a twenty year binge around the world. I’m afraid to mention it to Kris because she might say yes!

Here’s what I’m really talking about: We purposely opened back up the door to our doctor’s office you know how they close it after the nurse leaves and you wait seconds going by like minutes in an empty room well I pulled the door back open for two reasons. One so we wouldn’t be forgotten in all the mayhem and two to learn by watching and listening. So what was the big reveal? When you are so caught up in what’s happening in the moment you loose perspective. I gained some back when we witnessed a doctor in the hall run up to several nurses telling them “yes we admitted her right away.”

You follow?

One patient they saw that day was so lousy with cancer that they hustled her into the hospital right then and there. Imagine going in for a consult being told you have cancer and by the way we are rushing you into the hospital. So think if yours truly was so bad I wouldn’t be typing this email been allowed to leave let alone have another six weeks to heal (party).

There have been a lot of positives with this journey momentary incidents that run across the board from inspirational to desperate. And one that has occurred to me but not emphasized by anyone is that in another six weeks this remaining hematoma/scar tissue may shrink even farther and perhaps even disappear. That would mean the surgery will be less invasive than advertised by the worst case scenario. Physicians have to plan for the worst case and spend a lot of time talking and focusing on that so they and you are not surprised. But as an individual you have to be fortified not to be drawn into obsessing about the worst case scenario. You have to drill down and find out about it so as to be aware but realize its only one possibility in a range of possibilities that also include the best probable outcome as well – otherwise that escape hatch your looking for in the tub is down the drain.

Paul

Sarcoma Treatment Jounal Entry Five

What a relief it is to be able to just walk around in a normal stride. Although not completely healed I’m feeling much better every day. The radiation still has some very visible affects and some stubborn areas that are still pealing but I’m through the dark side so to speak. Although I re-learned yesterday that radiation has some unseen affects as I crashed hard in the afternoon and was tired late after feeling great in the morning. I feel great again this morning and hope to be back on the treadmill soon. Little Martha has finally come together. I can not believe I can sit down and play this song. It has about a billion moving parts in it and is just so satisfying to be able to play.


So finally a much needed reprieve as I don’t have surgery until the 28th of March. There will be two doctor appointments prior to that and I’ll update you after the fact. But in the meantime you all need to help me take advantage of this down time by quite literally dropping the whole subject.

What a lost opportunity it would be to recharge my batteries if we go through the next 30 days without taking a breath. These days every time the phone rings I cringe. Those of you who have put me on their calendar for a regular Sunday call I am already dreading next Sunday. So please stop that right now and wait for the emails they come out on Monday morning. Please do not ignore the emails a lot of effort goes into them. In fact those of you who take the time to respond by email are the ones I prefer. Because I’m sitting down ready to read email instead of being caught by surprise with a call.

All weekend plans are tentative: Kris and I are playing it by ear and may run off to the outer banks some random Friday afternoon if the weather is nice. We are liable to up and go any weekend and might not know until that Thursday night. I know for you planners that’s hard and we apologize for that but that’s kind of how we roll anyway. If you take it personally you have to stay behind after class and write on the blackboard I’m a dummy a hundred times.

Others who have mentioned visiting me in the hospital good lord please don’t. This is not a party or a reason to get the family together. I am going to be zonked out of my mind one night and doing physical rehab the next day and hopefully headed home the third day. I’m not interested in dealing with any additional germs brought in from who knows where and will have a huge incision that I do not want contaminated with staph or any other kind of bug or virus. Please clue yourself into this situation its major surgery and the only person I want to see when I wake up is my wife with a milkshake. Anybody else other than Kris needs to wait until I’m back on my feet. That’s not a request that’s an order. Those of you planning on coming down to see me at home after surgery – please don’t. Again I don’t need any germs introduced from out of town or down the street so wait until I am back on my feet. Then I’ll be ready for visitors, beers, laughs and story time. So everyone sit tight, relax and put the worrying, and planning aside for the month of March.

Now that everyone’s offended I’ll say I know you are all well meaning but the thing with this disease is that there is a huge constant mental component. Constant so while you are going on about your day and life pre-occupied by what’s confronting you at this very moment the cancer patient in your life is praying for that distraction. If you really want to do your cancer friends, congregation members, neighbors and family a break don’t talk about cancer to them….ever….they want the normal boring stuff. They know they have cancer and are trying to have as many normal moments as possible. Talk to them about the weather, your team or make them laugh. It’s the best medicine.

March presents itself as a whole month of normality for me (hernia scars are fading, my junk is looking more or less normal again, I don’t have radiation targets drawn all over me, the daily radiation trauma is over, the smell of burnt skin and petroleum is gone and the peeling and burn is going away) you bet I’m going to take advantage of that as best I can even celebrate it – so you all need to play along…you feel me…enough said?!?!


I know it seems counter intuitive but when you approach someone with cancer and talk about it you are expressing your fears and concerns projecting your worries onto them making them relive it and sapping them of their strength as they digress upon it once more (obsessing about it yet again). Visiting them at the hospital or even at home is a lot like rubberneckers on the highway or visiting gorillas at the zoo and just about as dignified.

Wait until I’m in my natural habitat to come visit me!



Paul

Sarcoma Treatment Journal Entry Six

Hey Friends and Family,
March madness well not really things are quit calm – the calm before the storm perhaps but I am noticing my hernia surgery swelling is resolving itself further. After five weeks of radiation I am now just finally repairing myself naturally and the swelling from the original surgery back in November is getting another chance to go down. I hope this bodes well for the next surgery scheduled at the end of the month. We received some wonderful artifacts from big brother Jay in the mail recently a little something from the old days and I think all of you elbow benders might get a kick out of Highball Tommy! Plus we have an additional artifact to the Flyers shrine building under the television. Only Jay would have a cassette of Kate Smith singing God Bless America.

I feel great and was back up on the treadmill taking full advantage of our snow days and even got a little run in as well during my work out. I have to be careful with rubbing my legs back and forth as I run with all that new skin still recovering from radiation. But I thought I would add Vaseline like the marathoners do the next day to keep a rash from forming but decided to lay on the sofa instead.  Also on the recovery front the guitar is back out and in full swing. I’m headed off tonight to play out in public. You all know it’s about the music with me it gets my mind focused elsewhere is incredibly satisfying and I strongly believe it has curative effects.

Just listen to Pharell’s “Happy” over and over again and try not to feel euphoric. http://www.youtube.com/watch?v=y6Sxv-sUYtM&feature=kp
(Can someone say Smokey Robinson check the little one at 12:28pm at this link http://24hoursofhappy.com/).

I’m actually hoping for a small crowd at tinis tonight so I can catch up with the staff. The owners have been very supportive and are fans. Those of you local come out if you can there won’t be anyone there frozen yogurt season is not yet upon us but I’m itching to play trying to give back and taking advantage of this down time in my treatment schedule.

2861 Lynnhaven Drive and North Great Neck

It was great to see Mike and toast the Sunset Sunday afternoon. Hopefully we will be circulating Saturday as we need to catch up with Jeff and Lori as well.

That’s all for now and well see the family at the beach in July god willing and the creek don’t rise.
Kari and Mark get your butts down here some Saturday night soon we know you have busy weekends so it’s tough but we’ll catch up – keep us posted.

And last but certainly not least a huge shout out to Denice and Janette who made a miserable situation tolerable. They laughed at all my vain attempts to put a positive spin on the situation. Thanks for playing ladies and they were there with a comforting word when I felt down. They are champions more than any sports team, politician or entrepreneur could ever be. Whether they know it or not or whether they like it or not and I really don’t think I can overstate it they are friends for life like Androcles and the Lion http://en.wikipedia.org/wiki/Androcles and that’s how I feel about that. Hope to see you two soon under different circumstances. I’m due in at 9am for a follow up with Scott on the 11th hope to say hi then as well.

Peace!

Paul

Sarcoma Treatment Journal Entry Seven

Beautiful day family and friends and I had a very good doctors visit this morning. In short the suspicious mass that may or may not be a tumor has shrunk even further. My radiation oncologist was delighted – it’s a short message today but a sweet one…smaller is better it quickens recovery and hopefully reduces the surgical field. It was great to see Denise and Janette and even with a lobby full of patients they made time for me. They are two very special people and one of several good things that has come out of this experience. Remember there is darkness in light but there is also light in darkness and these two shine especially bright.

Paul

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