Paul's pancreatic cancer treatment
Now, to backtrack a bit. Three months ago I started having indigestion. Most people would just pop an antacid and forget about it. But I had suffered through pancreatitis, a severe inflammation of the pancreas, when I was only 20, and this indigestion reminded me of that feeling. So I called my doctor (thank you Affordable Care Act) explained the situation and my history, and got an immediate appointment. My doctor referred me the same day to a wonderful gastroenterologist who began a series of tests. I have been poked, prodded, bled, had tubes snaked through my esophagus, been filled with contrast, and scanned in multiple ways. During all this I was able to eat less and less, had more and more discomfort, and began to turn yellow. As a result they scheduled an ERCP, a procedure to check the pancreas endoscopically, take biopsies, and place a stent in the bile duct to relieve the built up pressure and stop the jaundice. The hope was that this was just a severe attack of pancreatitis and the stent would reverse the situation.
After the ERCP, however, my blood pressure dropped and the sheer amount of backed up bile required me to be admitted to the hospital with a nasogastric tube to drain the excess without straining my digestive system. Just when I thought it could get no worse, the biopsy results came back. I have pancreatic cancer. But, all signs point to it being isolated in the pancreas, which means removal and a short course of chemotherapy after give me a much better chance of recovery than most have by the time they are diagnosed. But all this comes at a cost. The surgery to remove the mass is major, I will be in the hospital for 2 weeks, then have a 3 - 6 month recovery at home, followed by 18 weeks of chemotherapy before my life can return to normal. And that is the best case scenario...which is the one we are aiming for, of course! And, of course, time is critical. My surgery is scheduled for two days from now on February 8. This means I have no real time to prepare.
Like many of you, I have always been a freelancer. I love the freedom and the variety of work. But the downside of freelancing is you never know when the next job will come. We have no financial cushion to carry us through a year or more of treatment and recovery. Which is where you come in. I am trying to raise funds to cover expenses during this time. Like most people, I have a family to support, a mortgage, a car payment, utility bills, and now, on top of all that, additional expenses for medical treatments. Without your help, I am unsure of whether we will survive this, even if the surgery is successful.
And if you cannot help, there is one other thing I want you to do. If you have indigestion that lasts more than a week, go see a doctor. Don't just ignore it or blow it off as insignificant. With early detection you can be one of the 1%, not one of the 99%.
Because of the uncertainty of whether or not his condition will improve we are in the process of connecting with hospice care. Hopefully it will only be temporary support until he can resume treatment, but pancreatic cancer is unforgiving so there is no way to know for sure.
Which brings me to my current dilemma. My goal is to have Paul stay comfortably in his own house. However, the money I had been counting on to get us through the next few months is not coming...and we are at risk of foreclosure. I need to raise enough money to keep the house so I don't have to disrupt Paul further in what may well be his last days. So, if you can help a little now would be the time. If you can't...I totally get it. If you could share this message far and wide that would also be appreciated. I need everyone's help now more than ever as this hideous disease digs its claws in even deeper.
With the recurrence of the tumor comes pain, and more and stronger pain meds. I hate how little I manage to do when I take them, so I am going to try a plexus block, where they ablate the nerves around the pancreas. Some people get full relief, others less, so fingers crossed it works and I can enjoy more of my life pain free.
Saturday night may have changed all my carefully considered plans, however. I slipped going upstairs and tumbled down the full flight of hardwood steps, knocking myself unconscious. I missed the excitement of the ambulance ride to the trauma center, and I will probably never remember exactly what happened. I still can't believe it. Aside from the concussion I managed to fracture my spine and my hip, and collect a truly impressive collection of bruises and contusions. Luckily the fractures are stable and the decision was made not to operate, but to let them heal on their own. After 24 hours observation they let me go home. I am now unsure, however, of how this will affect the clinical trial, I may not even be able to manage the car ride to get there as sitting in the car is intensely painful. Getting around has now become so much more difficult. For the short term I need to use a cane or a walker so I don't twist and worsen any of the fractures.
So, a month of ups and downs. The year is grinding to a close, the bills are not. I can still use your support to keep going as I try to tackle this biggest challenge of my life. Thank you all for your good wishes and financial help, it means the world to me and my family. Happy holidays to you all, whichever ones you celebrate.
Some other suggestions (if you haven't seen them already) http://jeanninewalston.com/integrative-cancer-care/cancer-support-center-integrative-cancer-resources/cancer-financial-assistance/ Also www.npcf.us/core-programs/financial-resources www.cancer.org/treatment/finding-and-paying-for-treatment www.cancercare.org/financial
Hey Paul, Thanks for the update. I'm sorry this is so difficult - I have seen that one chemo really reek havoc on people. Sending you lots of love. Have you tried contacting these guys for help? www.run4projectpurple.org They have financial assistance, not sure of the parameters. Holding you in my heart and envisioning clear lungs and body.
Th adventure begins soon, I will be back to personally thank you all as soon as I can, for your generosity and fine, uplifting spirits. Take care of each other out there, you certainly have helped me immensely in knowing my 'community' is a beautiful and living force which I will always cherish...CHEERS!
Hi Paul! I am so sorry to hear of your diagnosis. PLEASE contact Patient Central at the Pancreatic Cancer Action Network at (877)272-6226 for up to date information on pancreatic cancer so that you are able to make informed decisions on your treatment etc. This is a NO COST service and they will be a part of your team. And by the way, the 5 year survival rate is actually 9% - which is still not great so the more information you can arm yourself with the better equipped you will be to beat this! Our website is www.pancan.org.
At this time there is no service or memorial planned. Instead Paul wanted a party (which perfectly expressed his personality). I am not ready for that as yet, I am aiming for early summer and will, of course, post details once they are available. My eternal thanks to every one of you for lending the financial and, more important, emotional support Paul relied on throughout a very long and very stressful year.