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!!!

More Appointments & The SUPERBOWL

Monday I had my appointment with the Lexington Natural Health Center.  They specialize in treatment of oncology patients and serve to complement conventional treatments with natural therapies aimed at reducing side effects, making chemo more effective on cancer cells, and homeopathic remedies as another tool in the fight against cancer. Before my visit I listened to some interviews with the doctor on YouTube.  He described cancer as analogous to storming a castle - first you have to get by the walls, then the guards, to take the king.  In his interview he discussed different natural products effective in each of those three areas.  I was really looking forward to meeting him and hear what he recommended for my type of cancer.  At my appointment it was interesting to learn what makes up a cancer cell, how it pairs with certain enzymes and amino acids naturally occurring in the body to trick the immune system, and how certain blood tests could show specifics of the cancer cells and white blood cells.  After reviewing my medical history he drew labs and sent them away for chemosensitivity testing, killer cell testing, and I will go for testing to determine my insulin response to sugars as a possible cancer growth factor.  As an engineer this is all very interesting stuff.  My cancer has been aggressive from day 1, and chemo didn't kill it, so can't hurt to supplement it with an individualized nutrition plan. Of course the tests aren't free either, nor are they covered by insurance, but thought it was worth my life.

Tuesday I went in to have my port put back in at the same office as the liver biopsy.  Two bad I couldn't have both done the same day last week.  Also meant another day of fasting.  If the cancer won't kill me all these procedures, fasting, and blood draws just might good Lord.  The procedure was delayed about an hour, but when I eventually went in it all went well.  This procedure was done in a neurosurgery room with a very skinny patient table and 10 large computer screens.  Like the biopsy I was mostly awake for this one and could hear, smell, and sense everything happening without any pain.  That includes all the pushing, tugging, and stitching.  I recommend asking the nurses to just knock you out.  I won't be able to shower for two days with the dressing, or take baths or go in a pool for 2 weeks once the dressing comes off.  And I can't hold anything heavier than a gallon of milk for a week, that includes my bouncing 2 year old son.  Poor Gary will have full time kid duty this week, no easy task with a 2 and 4 yr old.

I've been experiencing some nausea before the port procedure and have been constantly nauseous since the procedure.  I relayed that to my doctor who called me immediately.  Seems he has me on speed dial these days.  Because my liver function is compromised he thinks it's just residual from the procedure and my liver not being able to flush it quickly.  Hopefully I feel better tomorrow, if not he wants me to have more labs (more blood really?).  If the proteins in my liver are too elevated I won't qualify for the clinical trial.  And since I'm having more symptoms he wants me to start chemo as early as next Tuesday (6 days from now).  If we do that I won't qualify for the trial either.  Honestly he doesn't seem that enthusiastic about the trial.  Still waiting on the liver biopsy results to confirm I have the indicator needed for the trial, but they did confirm it is secondary cancer in the liver.

In better news, our friends did us the most incredibly caring thing - they are sending me and Gary to Super Bowl LI to watch our beloved Patriots play the Falcons!!!  How cool is that?!?  I have never been one to seek assistance, and I have no idea how I'll ever repay them, but wow the amazing power of friendship and giving.  They've already made me feel like a million bucks and I haven't even packed yet (but I did pick up a SB LI Brady jersey, youth XL of course which is $35 cheaper than a Women's).  It has been amazing to see the outpouring of support and well wishes, along with those who've reached out to share success stories of their friends or church members.  Love you all right back!!!