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!
Tuesday, February 28, 2017
Sunday, February 19, 2017
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!
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!!!
Wednesday, February 1, 2017
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!!!
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!!!
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