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
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