Yet Another Eventful Week

Since switching to Xeloda things had been running pretty smoothly.  I transitioned to short term disability leave which allowed me to recover from the terrible side effects of Gem/Cis and within a week I was walking again.  Within two weeks I was able to take visitors and our Texas friends Kris and Randy came to visit.  We also hosted the Seminara grandparents and held the boys 5th and 3rd birthday parties. Using my tax refund I booked a spontaneous trip to Florida to see Jeff and get some Vitamin D.  When we returned we hosted a 50th birthday party for Uncle Paul complete with over the hill shirts and cake.  That's a lot to do in 6-8 weeks even if you're not sick!

By the end of May I was starting to feel tired.  While in Florida I experienced a sharp pain just to the left of my spine and mid-back which made it uncomfortable to do much walking.  When I returned I had a spine MRI which showed traces of the disease throughout my vertebrae but did not measure sizes. Erik had a great idea to take a weekday afternoon off, cruise in the Porsche to the coast, have lunch, then cruise home. We choose Tuesday afternoon in Newburyport MA.  Normally this would be pretty simple for me but I just had no energy.  It took all I had just to walk from the car to the restaurant, the restaurant to the boat overlook, and the overlook back to my car.  Each of these is about 50-100ft apart, not really far.  It was a little cooler by the water but we had a nice lunch and cruise, I'm glad we went.

Then came the crash.  Thursday morning I awoke from a deep sleep but in terrible discomfort.  Everything hurt - liver tumors pressing on my ribs, the lower right quadrant of my back, labored breathing, and lack of appetite.  I tried my standard 600mg of  Advil but it wasn't enough.  I spent Thursday on saltines, water, and Advil which certainly wasn't going to help my energy level.  Thursday night I had cold/hot flashes and a terrible time sleeping.  Friday wasn't much better.  I went to my acupuncture appointment but that took all the energy I had for the day.  I was able to eat a little more having very small bowls of soft soluble meals (milk soaked in cereals, mashed potatos, pasts, etc).  Friday sleep wasn't much better either, and Saturday day was pretty much the same.  At this point I literally felt like I was hanging on by my fingertips and could slip at any moment.  It was time to take more serious action.  I emailed my oncologist who was away for the Memorial Day holiday but he got right back to me.  He recommend I go to the Emergency Department (ED) at MGH Boston where they had access to the best imaging tools and teams. That's what I did and so began my 5 day hospital stay, 1 in ICU and 4 inpatient.

The first night/day in ED/ICU was a little scary as they were trying to figure out why so many of my systems were crashing.  Was this the end?  They pursued two options - either I had an infection that was draining my electrolytes and throwing my system off balance, or the cancer had progressed and put me into liver failure.  So they treated me for both.  The drawback here was an endless supply of IV bags - antibiotics, potassium, calcium, phosphate, etc. that swelled me up like a balloon.  I gained 25 lbs in my 5 day hospital stay.  After a CT scan, the doctors shared that I have ~10% liver function remaining and it could be days or weeks for me now. They were surprised I wasn't in more pain.  So where is the good news? It wasn't an infection so we could stop the unnecessary IV fluids (and swelling).  All through my cancer journey the imaging results have been low accuracy (except MRI) so likely the case here as well.

After this experience I am starting a new treatment plan taking Navelbine chemo (IV) one time a week at MGH Waltham.  I had my first chemo treatment in Boston before discharge including another RBC blood transfusion (this drug is known to knock your RBC low).  Navelbine was picked as it scored 80%+ effectivity against my type of cancer.  It's also only a 15 minute infusion so should be a quicker in/out at the hospital as well.  In addition, I have been prescribed dilaudid (opioid) for pain and sodium bicarbonte for electrolyte balance.  To help with the swelling in my legs I met with PT and they gave me some recommended exercises to release the fluid.  With that I signed the discharge papers and my case was handed over to the outpatient nurse providers to establish my at home care plan.

Today I met with the nursing home aide who set me up with 2x/week in house visits.  These visits will check in on me and my environment - are my furniture arrangements accommodating, do I need to alter any meds, what is my quality of life, etc. After looking at my legs she recommended another low dose med which she got approved through my oncologist.  Hopefully this will take some work off my poor swollen liver.

So just like that, in one week's short time, life can throw you a curveball.  Every time I have the "end of life" conversation with my doctors it feels like an out of body experience, but this time it felt more real.  My advice to everyone is give life your all, everyday, and do something you ENJOY.  I have always been thankful for the experiences I had growing up in rural NH, going to college and grad school out of state, getting to touch the sky (working on airplanes), and meeting an amazing network of family and friends across the country that made my life better with every conversation, text, F-book message, or phone call.  What a ride...and I'd do it all again!

My swollen liver - CT scan

Our 9th floor view toward the Pru and Charles River

Starting new chmo (15 min via IV push)

Here comes the sunshine!

And the window washers