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

Time To Pivot - New Chemo

In the imperfect world of medicine, patients are given advice based on population statistics and advised on the best most successful treatment plans.  However, when that statistically popular plan does not work for you, you have to consider multiple plan Bs in the face of uncertainty and the remaining longevity of your life.  Today was the day for that conversation.

On the current Gem/Cis chemo regiment, I experienced 6 good days for every 15 day cycle (40%).  And that's if you count staying in bed all day without pain or nausea, but such intense fatigue you can't even stand to brush your teeth, a good day.  Another piece of information we had today was my recent CT scans which revealed progression of the disease - more in the liver, lungs, and bones.  However my lab counts for my liver functions seemed to have stabilized.  Armed with this information, we made the decision with my doctor to stop the current Gem/Cis treatment and pursue another drug with less toxicity.  This "plan B" came in a couple options - 1) stay on Gem only, 2) switch to Xeloda or another single IV drug, or 3) pursue a phase 1 clinical trial.  While Gem scored high on the cancer response test, it has been very toxic so we ruled that out.  We got the literature and are reading up on the Phase 1 trial, however a phase 1 is the initial phase, you will be the first patient to experience the effects good or bad.  It's also randomized 50/50 so you may be driving in/out of Boston every day and not even get the drug.  In lieu of that, we chose the Xeloda because it held the disease during my radiation treatments with little side effects.  I also have a stockpile at home.

With the switch to Xeloda, I would not need a chemo infusion today.  However I did receive my first treatment of Zometa which is a drug used to promote bone strength and ward off cancer growth in the bones and prevent other issues (fractures, etc).  It is also used to treat people with osteoporosis.  We will see what the next 24 hrs brings, but possible side effects are flu like symptoms with 103 deg fever and bone pain.  Some patients experience nothing, sure hope I fall in that category.  I will receive Zometa once every 3 months.  I am also not allowed to have any major dental work while on Zometa.  

After the Zometa side effects pass, by the weekend, I will be able to take Xeloda again.  This regiment will be 14 days on, 7 days off with 3 pills taken 2x/day.  Side effects of Xeloda are hand foot disease.  Thankfully I didn't have to battle that before, hopefully won't again.

Looking forward to feeling more myself again so I can enjoy Easter, T-ball, the Boston marathon, and birthday parties with my boys.  I've got a lot of living to do!

Another Eventful Week - No Chemo (Low RBC)

It's been an eventful week.  Last Thursday I had my follow up blood draw with Dr Belanger to check my immune system markers in my blood.  Following that appointment I was confined to bed throughout the weekend just too weak to do anything else.  I felt like I was coming down with an illness.  My family came to visit Saturday and I was able to muster enough energy to go downstairs and visit for awhile.  By Sunday night I was feeling really warm and my temperature came in at 101.1 deg.  We monitored it for about an hour, and it didn't change, time for my first ER visit.  We went to Emerson and after a lab draw, chest xrays (negative), and a conversation with my oncologist they sent me home with having a potential virus.  They did take a couple blood draws for cultures to determine if there is a bacterial infection somewhere, results are still pending.  Parker had been sick earlier in the week with a fever and cough, maybe I picked up a touch of that.

Tuesday I went in for my next Cis-Gem chemo, but unfortunately my red blood count was too low.  This was discussed as a possibility with the ER doc and my oncologist.  They took more blood and sent me home to return the next day for a blood transfusion.  They must have a whole closet of my blood in MGH by now.

Of all the tests, procedures, IVs, and injections I've received, a blood transfusion was still my biggest fear.  It stems from the days people could get HIV+/AIDs and knowing the medical profession is still prone to errors (like my last port).  A transfusion like that I could never recover from.  Knowing my heart was starting to pay the price for low red blood counts (elevated heart rate), and faintness of breath when I did any activity, I agreed to go through with it.  Today I took 560 cc's of red blood cells.  That's like 2 and 1/3 cups of blood.  It was transfused into me via my port over 2 bags, 2 hours each.  We waited an hour for the blood to arrive from downtown.  So it was another long day at the hospital.  The good news, my legs don't feel like boat anchors anymore, I can move!  The bad news, I saw my face in the mirror and started crying, I looked like a whole other person.  My face was swollen, bloctchy, and flushed.  I would never willingly go out looking like that.  Once my infusion was over I did all I could to get home quickly.

Feeling Sick

Getting Blood

2nd Round of Chemo & Balance

Today I finished my second round of chemo.  So now I have had two rounds of gemzar/cisplatin, and two rounds of just gemzar.  Cisplatin is a rough drug, I have to take steriods and nausea meds 3 days after plus magnesium and potassium for 7 days after.  When I get a cisplatin infusion they give me tons of fluids and ask that I stay well hydrated and urinate often so the drug doesn't impair my kidneys.  The gemzar is much easier as chemo drugs go.  It's a 30 min bag and I only have to take a nausea pill.

When I woke up this morning I knew it was going to be one of my low days, I just didn't feel well.  I didn't sleep well, I had nausea, and I felt incredibly weak.  Not the best day for chemo but I had to go through with it.  I had a small breakfast to get something in my system so I could tolerate the chemo.  When they connected the port and drew labs I got faint and had to lie down.  I felt that way for a couple hours.  They gave me fluids before chemo and that helped.  I also managed to eat a small bag of pretzels.  After my infusion I went home and slept the rest of the day.  I had planned to work the afternoon but my body wasn't up for it.

Living with cancer and chemo is all about finding balance.  I balance the pain with Advil and oxycodone.  I balance the nausea with small amounts of food or a nausea pill.  The hardest is the mouth sores which I try to manage with chamomile tea but it makes it difficult to take some of the larger pills and most of the supplements.  I have had to trim back on the supplements by about half.  I've also found that the arginine supplement gives me nausea.  I also stopped taking the TLC as vitamin C has mixed reviews on working with cisplatin and I already get the TL in the magnesium and potassium pills.

In my mind I try to stay positive and believe that the pain is my body fighting the tumors and that my energy level is better most days as a sign of healing.  I continue to eat mostly plant based foods and vegan.  I've cut out most sugars.  I haven't been able to give up meat completely but I try to make sure it is in small proportion to my vegetables.  Mom and I have had fun trying new vegan recipes including peanut soba noodles (peanut butter spaghetti we told the boys), blueberry farfalle salad, vegan soups, and mashed banana pancakes.  I thought I ate well before but there is so much temptation around us, foods high in refined flour and sugars or high in fatty dressings and oils.  We eat yet we are starving our bodies.  I have found little need for coffee since I have been eating better, and I attribute my good days with better energy to eating well.

Next week is my off week when my counts are expected to be lowest.  It's also the week we finally deploy the new software version I've spent so many hours supporting.  And it's almost April!

No Chemo Today - Low WBC

The last couple of days I have been straight exhausted.  I want to get up and do things but my body just won't cooperate.  Today when I went in for my second round of chemo I learned why - my red blood count (RBC) was half the minimum. You need red blood cells to transport oxygen to your muscles.  Additionally my white blood count (WBC) was also half the minimum along with low hemoglobin, so no chemo for me today.  When talking with the nurse this is normal for this chemo regiment, and most patients need an adjustment.  My doctor is assessing whether we lower the dose, add neulasta (boost WBC production, but with side effects), or go to an every other week chemo schedule.

The good news is that my liver function continues to show improvement.  I've been on the nutritional supplements for 2 weeks and through 1 round of chemo.  Two of the 5 liver health indicators continue to stay in normal levels, and the other 3 continue to drop back toward normal reducing as much as 45%.  As for the pain I still feel the "pulled muscle" feeling in my abdomen time to time, especially at night, and the sharp pain in my should from the liver swelling and pressing on the one nerve but it is manageable.

Yesterday I had the LabCorp test which took 18 viles of blood (another reason to be exhausted).  This will measure my cancer growth factors including how my body processes sugars and other enzyme responses.  Should have the results in a couple weeks and will make any necessary adjustments to my supplements.

For supplements I am taking 101 pills a day, that's a lot of pills!  It's very easy to get off schedule if you take a nap, go out to run errands, or have visitors, but I do my best every day to take as many as I can for the 30 day trial period.  I'm half way there!

Back In Chemo - 1st Round

The day after we returned from the superbowl I was back to business with my first chemo infusion of the new drugs.  The day started with complications with my new port placement.  Given this is the third time they have had to open me up, the wound hadn't healed, and worse the port was directly behind the incision making it unusable.  So for this week's treatment I had to take it through a vein in my right hand which was very unpleasant.  It burned, a lot.  They diluted it as much as they could with saline which also meant the treatment took a whole day (should have been only ~4 hrs).  For this round of chemo I am receiving Gemcitabine (aka Gemzar) and Cisplatin.  The Cisplatin has platinum at the nucleus so guessing this stuff is fairly expensive.  I receive both drugs week 1, the Gemzar week 2, then a week off.  With the Cisplatin I have to take potassium and magnesium supplements in giant horse pills every day 7 days following treatment.  I also have to take steroids and anti-nausea meds twice a day for 3 days after treatment which pretty much put me in a fog.  And with this chemo and side meds I have been experiencing pretty strong fatigue.  I try to nap when I can and save my energy when I need it.  I hate this part of chemo, if I'm going to be sick I'd like to keep my energy for playing with my kids, they are my motivation for going through all this mess!  With some of the adjustments in nutrition prior to chemo my liver function did show some improvement with ~20 pts reductions in two areas and about ~100 pt reduction in another area.  But it was still out of range for the clinical trial.  Hoping we see continued improvement at my next labs, this chemo is pretty rough, it's hard not knowing how my rounds of treatment I'll be receiving.   

Back in the infusion chair

Superbowl Comeback & THANK YOU!

What an amazing experience we had in Houston TX for the Superbowl!  We flew down Friday night to DFW and spent happy hour with some of our closest north Texas friends.  Appreciate everyone coming to hang out and catch up!  The next day we drove to Houston.  Texas is a big state to drive across, especially when you're used to all these little states in the northeast, but we made it out to downtown Houston to participate in the pregame festivities.  It was VERY crowded but everyone was in great spirits for the game.  Sunday morning we woke with excitement for the big game.  As part of our hotel and package we had a tailgate party pregame in one of the parking lots near the stadium.  We even had a special guest - Arian Foster, former Texans (and Dolphins) running back - come join the tailgate.  I got to play a round of cornhole with Arian then he signed us some footballs.  Honestly thought he'd be bigger, but he seemed normal size.  He hung out with the tailgate party for a while.  I asked him if he missed playing now that he's retired, he said no the game is pretty hard on the body.  Makes sense to me.  Otherwise he didn't talk too much, keeping to small talk.  I'm sure that's normal for guys like him.  We befriended a couple from Harrisburg PA who had earned their tickets leading sales for their region, and while the Eagles weren't in the game, they were still pretty excited to go to the Superbowl.  We went into the stadium with them and checked everything out.  It was busy outside the stadium but once you got in it was pretty easy getting around.  We sat in the 300 level seats mid way up the stands above the Falcons end zone and looking toward the Pats sideline, they were great seats!!!  The pregame activities, the game, halftime, overtime, and post game went by so fast, glad we were recording it at home.  What an amazing game to attend.  By halftime the Pats were down 28-3 to the Falcons, there didn't look like much hope.  But we chipped away in the 3rd quarter and tied it in the 4th quarter to breathe new life into the game.  And after the first ever Superbowl to go into overtime, the Pats made a strong drive and scored a touchdown for the win, and right in front of us!!!  It was so incredible!!!

A special shout out to Rama and Shawn for organizing this, and thank you to all our friends, family, and co-workers for sponsoring our trip!  It was truly a once in a lifetime experience that we will never forget.  We are so very blessed to have you all in our lives!

On our way!

First stop Cowtown

Pregame with Arian Foster

Autographing footballs

Going into the stadium

Opening ceremonies

Pats win!  Let the party start

Had my rally cap on

A big W in big H

After all the excitement and emotional roller coaster of the Superbowl we journeyed back home.  The first thing we did when we got home before getting the kids was watch the 4th quarter and overtime on the DVR.  It still hadn't sunk in that we were THERE for THAT game!  Truly incredible.

Have not taken this hat off since the game

After the excitement of this year's superbowl, who knows, maybe I'm in for a comeback myself!  Go Pats!!!