Epiphany… and Legoland

The girls relaxing

The girls relaxing

Someone may need to go on a diet soon.

Someone may need to go on a diet soon.

At Legoland Hotel

June 2013

After the May CT scan results we were a bit down. We felt like we were back to square one and a little lost. We thought we were doing so well and even felt we had turned the corner on this thing. The result made me realize how complacent I got. Our (or mine at least) prayer life waned as Carmen looked and felt so good. I lost sight of who the true healer was. It surely wasn’t me or the doctors.

I sat at home wondering where to go from here. Her oncologist wanted to go back on Oxali or another drug in place of Oxali called Irinotecan. Irinotecan came with its own set of side effects, but because it didn’t have the neuropathy side effect, it was used in the rotation of chemo. In other words, after 7-8 rounds of Oxali, her hands are so bad, they have to discontinue it and replace it with another chemo drug that does not affect her hands. Then after that drug runs its course on her, we would rotate to another drug that had different side effects. Basically playing musical chairs with chemo, forever. There was no end to this because there is no cure for this. The problem with this scenario is of course each time she gets treatment, it weakens her and damages her body. Also, since the large tumor barely moved in size, the remaining cells would become resistant over time, and sooner or later, would make a come back. These cells will then begin to grow unhindered and unaffected by the chemo drugs. Not a pretty picture. So I once again searched for answers.

I came across a book called Outsmart your Cancer by Tanya Pierce on Amazon.com. So I ordered it and read it before we left for Legoland. The book is about Alternative non-toxic treatments for cancer. It lists out numerous treatments and provides case studies for each. Up to this point we would never have considered anything outside of chemo for Carmen. We had always coupled toxicity with effectiveness. If something wasn’t toxic, how could it attack cancer? I did read the Gerson book (juicing and supplements), but didn’t realize there was a whole mountain of other treatments that might be effective against cancer, that were not toxic to the rest of the body. So we discussed each one and began praying. We prayed for wisdom and guidance because were surely didn’t know where to go, and what do choose. Should we go back to chemo or try something else? We prayed and prayed. With each prayer, we felt the impression that we should try something outside of chemo. It was a very big decision, one we didn’t take lightly, but with much fear and humility. The one we ended up choosing is called Protocel. You can look it up for yourselves. Yes, I did read about all the negative things about Protocel, but after weighing it against other evidence, we decided to give it a try. I had heard about Protocel a few months earlier, but completely dismissed it because it wasn’t a toxic drug. The epiphany I guess came when I read about a bunch of stage 4 cancer patients that were cured with Protocel. My question was, could all these people be lying about their cancer and subsequent recovery or were they telling the truth? The former seemed very unlikely because most of them had nothing to gain from doing so. I can see a few attention hungry people doing this, but the vast majority probably wouldn’t. They weren’t selling anything nor wanted anything except to share their stories. So if they were telling the truth, then the conclusion must be that this stuff may actually work.

After I canceled the procedure to implant the port in Carmen (instead of PICC line), I sent her oncologist an email stating our intentions. He of course wasn’t happy. When we went for our regular visit he insisted we change our minds. Carmen stood her ground and remained stoic. Later she tells me she almost fainted from the pressure. I thought she did fine. Again, at this point all options were on the table. We would try this for a bit and if it didn’t work, we could always go back to the standard conventional treatments. However, it just felt like God was moving us toward this. Can’t explain it.

Legoland was a blast. We stayed at the newly built Legoland Hotel. This place is a mecca for kids. I would highly recommend staying there if you have kids.


Conflicting Setback

The girls got to tag along on one of mami's appointments

The girls got to tag along on one of mami’s appointments

May 2013

It was early May and we were excited for our upcoming family vacation. After an exhausting 10 months we booked a trip to the Aulani resort in Oahu set for June. I had never been to Hawaii so I was looking forward to it. But I was realistic about our trip with a baby and 2 crazy children in that we would just be relaxing at the resort and not site seeing much. Carmen wanted her hands and feet to heal a bit before our trip so we asked her oncologist if we could take a little break from Xeloda. He was Ok with the idea but first wanted to see one more scan to make sure things were still in good condition. So we agreed.

The date was set for May 28th for Carmen’s 5th scan since last July. These scans are not much fun. It’s not anything like an Xray. First you’re not allowed to eat 3 hours prior to the scan. Second, when you arrive, they make you drink a “smoothie” before the scan. These “smoothies” are to give the scan contrast. My personal favorite is the “vanilla smoothie”. Yum. Carmen will disagree on the taste because she’s the one that has to drink about 30oz of this stuff. The instructions are to drink this in 15 minute intervals just to prolong the agony a bit more. Once the nice headache and stomach issues set in, it’s now time to take off all the gold jewelry, metal studs, nose and belly rings, etc. After she puts on the hospital gown she’s off to the scan room and sit and wait, again. The actual scan takes about 15-30 minutes depending on how many sections of the body are scanned. Oh, one more thing, an IV is placed in her arm. When she had her PICC line this part was easy. But now that she has removed it, she gets to face her old nemesis every time she gets a scan.

The next day was her appointment with her oncologist to review the results. Looking at Carmen and seeing her blood markers we were expecting good results again. However, a curious thing happened right before the actual appointment. I had parked the car on the street and was looking at my phone just killing some time as I waited for Carmen to get ready to leave the car when I noticed another car stop right next to me. So I look up and signal to him with my finger that we weren’t leaving. I had assumed that he was going to ask if I was leaving. What he was doing was getting ready to park behind me. I didn’t realize the car behind had left. He then gestures back in a very offensive manner which caught me by surprise. So I calmly got out of the car and began talking to him. He was probably having a bad day and decided to act that way. It was cleared up quickly, but right then, I got a bad feeling about the day in general. Also another event happened which I can’t recall which also lead me to this bad feeling.

We finally made it to the appointment. The result? Not good. The stomach tumor looked unchanged, the big one on the right looked unchanged, but the left one did change. It grew, at least from what appeared from the scan. I began getting flashbacks of 10 months ago and the feelings from that time began to creep in. The left mass grew from 4×4 to 4×6. This mass was right next to the big one so it was difficult to measure accurately, but the radiologist for this scan felt the need to compare this scan to the prior one to see if any change had taken place. So he went back and (I’m assuming because there was no measurement from April) measured the April scan to compare. We were in disbelief. How can the tumor marker show such a drop all the while a tumor grows? One piece of information indicated one direction, and another showed an opposite direction. Could this increase be attributed to inflammation of the tumor, or is it cancerous growth? I was holding out hope that the nutrients she was getting in conjunction with her own immune system would be the reason the tumors grew by way of inflammation. In the Gerson book they do talk about inflammation and that scans will mistake this type of growth to cancerous growth.

We were certainly disheartened. As if it wasn’t bad enough the oncologist follows this news up with “I think it’s a good time for you guys to go on your vacation now”. That statement floored both of us.

We then discussed what other chemo treatments we could try. He recommended going back to Oxali, or try another drug, or another one, etc. If Oxali didn’t shrink the big one the first time around, would it on the second try? All that I had read told me no. Oxali looked like it kept things at bay (for now), but what were her chances long term? My definition of long term is measured in (many) decades, not years. It’s great that Oxali can help to hold back further growth of cancer, but she can’t be on this indefinitely. Eventually she will succumb to the chemo drug and will have to stop taking it. If the cancer is still around at that time, it will grow unimpeded and run its course on Carmen. I didn’t want a temporary solution for her. I wanted a long term solution. We felt that chemo would pretty much guarantee that she will not achieve the long term one because how it would affect her body. Plus the stats on stage 4 stomach are grim at best.

So she started her little break from chemo so we could go on vacation. This would give Carmen time to heal her hands and feet (gotta let those toes shine in the Hawaiian sun!)

Time to regroup and rethink strategy…