Saturday, June 30, 2012

Labyrinth: Misdirection in cancer care

Seven months ago, I was diagnosed with Stage 4 cancer. Since then I feel like i've been thrust into this maze, one with many paths and levels like an M.C. Escher drawing where it deceptively intertwines with itself with gaining a higher level only to find out you're right back where you started. Maybe 'Chutes & Ladders' is more an accurate depiction. This maze may have no way out of it. At first, we took the standard advice of the oncology doctors, referred to by my Primary care Doctor, who then referred us to a surgeon and so on. That lead me to taking a backseat approach to my treatment: I was just along for the ride. I didn't have any control over what would be happening to me and was not informed enough to take control to make decisions for myself and not heed the Doctor's every inclination. The more we went on and began to explore our options by seeking out, second, third and fourth opinions from elite hospitals such as Stanford, Cancer Treatment Centers of America in Phoenix, AZ, and now Dana Farber Cancer Institute in Boston, Mass. All with the same results (though we're still waiting on a consult at Dana Farber); we can only do chemo, we can't do surgery, you're already too far along, lets talk about keeping to comfortable... They think and act like there's nothing else to do for me but to palliatively treat my symptoms and ride out the storm.

Our approach and growing concern lead us to seek natural alternatives. As Alysha has written, i've decided to go along with a plan that now is overloading me with unnecessary supplements and prescribing therapies to do at home that are going to costs us thousands of $'s more out of pocket beyond the high price that we've already paid to follow his prescribed regimen. We've now second guessed ourselves and may be following the advice of a local naturopathic Doctor that would start me out more slowly to help my body regain it's strength and immunity at a better pace then treat with her own prescribed therapy.

There's someone waiting at every turn of this maze, waiting at every dead end to offer their greatest breakthrough protocol and ready to denounce any other's approach to tell you that they are wrong and would kill you if you followed their path. Miracle workers selling their own wonder cure, superfood, herbs, or teas, people who would take advantage of those in desperate times, who seek answers but find only empty promises. I've continually sought out the ladders scattered around this maze, to rise above all the confusion and get a clear view of the entire situation only to see the true extent of the mess that lays below. Then taking a step in any direction at that point flings me back down into the depths on a chute to a place that leaves me even more confused and lost than before. Going all natural and not following the advice of the Doctor for what to pursue next is hard as the decisions are all up to you and there's too much information to sift though, much of which is conflicting or contradicting in nature. What leads you to follow one and not another is not taken lightly, especially with your life on the line. Seeing a real person firsthand to discuss options and issues surrounding treatments out of the norm helps immensely. They can discuss your doubts and calm your fears over doing the right thing and really take control again to guide you through a a set path with tangible goals to reach and a clear end in sight. There are still many paths to explore to make sure we don't overlook any possible solutions; Leave no stone unturned.

As this goes on though, my physical condition is declining. The pain level has reached higher thresholds that all but incapacitate me for hours in the mornings most days. I drag around in a state of extreme discomfort full of body aches and sore joints that make me anxious and nauseous still. I keep getting told that it's still too soon for an major affects to be had. But what happened to the promise of being pain free in 10-days (but you don't get your money back)? Some deep realizations have confronted us lately that I don't like to ponder too long but are necessary to address. Though i'm strong and am an anomaly to some who see me still functioning, I may not be around for long. Though we're still pursuing all avenues of natural and conventional treatment, it's late in the game to be throwing any and all conjured cures at it. It's advanced and still advancing. Though we try to maintain the positive attitude of saying to myself that 'i'm only as sick as I think I am," my body seems to push back and say, "no you're not stupid, you ARE sick!"

Where does one go from here. Does he continue to wander the maze but ignore those who through miracle cures out at you, does he find a bench facing a blank dead end and sit and wait for the answer to present itself? Or does he just conjure up a bulldozer and force his way out of the tangles bushes and switchbacks? But what does that symbolize, how do I turn that simple imaginary solution into a tangible one? This parable yet has a moral, an ending that will teach and guide others from the experience to better direct their own life. But it's not there yet. That lesson has yet to come to fruition to be able to offer it as the powerful end to a story. Mine may not have ended yet, but the journey through the labyrinth should tell people that there is much out there in the way of cures for some horrible diseases, but you have to make you're own path, find that hidden wall in the brush that leads you to the exit with confidence. Getting lost in the jumble of potential ways to a solution can be overwhelming and make you want to stop and give up, jump in the backseat again and let someone else drive your life toward either a cure or disaster. Only you can know the direction to choose and only God knows if it's the right one. Trust in Him and hopefully that bulldozer will appear.


Friday, June 29, 2012


We both had crappy days. Pete was horizontal most of the morning due to pain which left me wondering what causes people to let go. What exactly happens that causes them to say their final goodbyes? Is it that their bodies simply can't function in the late stages of cancer? Is it that their organs have failed? Is it that the pain is too intense that they over-medicate? Or is it that they've simply lost hope?

Needless to say, these deep thoughts into unchartered territory left me on the brink of tears or in tears most of the morning. Finally Pete pushed himself to go meet a friend for dinner and I ran a few errands with the kids. After the change of scenery we were able to come back to each other with renewed minds which allowed us to truly discuss the future of his treatment.

For the past couple of weeks we have been re-evaluating Dr. Pablo's cancer treatment regimen. It seems too many questions have been left unanswered, too many supplement have been prescribed, and that Dr. Pablo is distracted by other events in his life which has left Pete with little direction. As a result, Pete has been experiencing increasing amounts of pain. This is both alarming and infuriating as we were promised results by Dr. Pablo. During a visit to a Naturopathic Doctor yesterday, she stated that, after reviewing Pete's blood work, she expected Pete to be a cripple and wincing in pain. She repeatedly expressed that he must be a very strong person because his blood work was very alarming. At this point his blood levels show that he is in a worse state than he was while on chemo. His body is very acidic, and knowing that cancer cannot live in an alkaline environment, this tells us his cancer is thriving. We were shocked but not surprised to hear Dr. Pablo's plan was not working the way we were promised it would.

During that visit, Dr. Miller explained how she would approach Pete's condition. She feels Pete's body is being overloaded on the current regimen and is not able to process and/or use all the supplements being pumped into his body. In contrast, Dr. Miller would start out slowly by introducing a few nutrients at a time while heating up Pete's core temperature with additional supplements. The heat causes bacteria and cancer cells to die off because it has been proven that cancer cannot live beyond a certain temperature. She also uses a specially formulated intravenous vitamin combination that she believes kills cancer. In addition to all this, she has created a food plan that will feed Pete's body the optimum nutrition in order for it to thrive.

With that being said, you probably think we have chosen to drop Dr. Pablo and pursue treatment with Dr. Miller. Not exactly. The truth of the matter is that Pete's cancer is advanced, very advanced. For a while we have ignored the severity of his condition because our hope has overridden our fear. However, at this point we know the chances are slim that he will live out a normal, happy, healthy life as most of us desire for ourselves. We have decided that the hope must continue because it gives us a reason to press on. And despite the overwhelming evidence that Dr. Pablo's program may not be the right one, Pete still remains hopeful that it may be. So, no matter which treatment we decide to pursue---whether Pete decides to continue with Dr. Pablo or switch to Dr. Miller---we still have hope for the future.

And although, we don't know exactly how and when those last days will overtake him, we do know that we would rather live in a state of being hopeful as opposed to feeling hopeless.

Phillipians 3:13-14
Brethren, I do not regard myself as having laid hold of it yet; but one thing I doforgetting what lies behind and reaching forward to what lies ahead, press on toward the goal for the prize of the upward call of God in Christ Jesus.

Wednesday, June 27, 2012

Surgeon {Too much pain to bear}

Yesterday I came home from the park with Lucas to find Pete lying on the floor of the living room. He was in so much pain, he could hardly get up. For a while we had been tossing around the idea of getting a permanent colostomy, like other people we've met, in order to lessen the pain, etc. but each time we/he decided he'd rather live with the pain. But, when I found him in such a terrible state, I couldn't help but say, "We're calling the surgeon now!" I at least felt it was a good idea to meet with him again and discuss "options".

So, we met with the surgeon today and he suggests radiation. Many times, if radiation works as planned, it can help with pain management. So, as of now, we are waiting on a referral to the Radiation oncologist. Pete is continuing with the all natural regimen as instructed by Dr. Pablo in hopes that it will do what Dr. Pablo states it will do.

Thank you for all your love and support. All prayers are welcomed and appreciated.


Wing and a Prayer {Livestrong in Davis}

Last weekend we had the pleasure of riding in the Livestrong challenge in Davis, Ca. There were a few participants who came out to support Pete. They included myself, my step-father Rick, his co-worker Dennis, and a few of Pete's co-workers---Randy and John, as well as John's girlfriend Katie.

Most of us only dared go as far as 20 miles, while a select few, John and Katie, pushed the limits with the 65 miler. To be truthful I was terrified I wasn't going to be able to complete the 20 miles. I had done no training and almost told Pete to go on without me after having a terrible night with Lucas in the hotel the night before. But I persevered and it was the most fun I have had in a long time! I loved pushing myself to complete such a physical goal, being out on the open road on the outskirts of Davis, passing other cyclists (even if they were just moms pulling bike trailers), and most of all, doing it all to show support for one of the strongest fighters I know, my husband.

Thank you to all of you who showed your support either by coming out to ride with us----either virtually or in person, donating money for cancer research (we raised over 3000 dollars), standing on the sidelines (my mom, sister, and cute niece and nephew), or sending prayers. This was such a great experience and one we will definitely do again. And wouldn't you know, the one with cancer beat us all to the finish line. Go figure!

Monday, June 25, 2012


I apologize that it seems Alysha and I only blog to vent in times of doubt and frustration, though, unfortunately, that's what our life is full of right now. We thought we had a clear path to follow for alternative treatment and faith in the program that we decided on but are having serious doubts about the validity of the program and of even the man behind it all. I know Alysha had her doubts in the beginning, though I felt because of the comprehensiveness of what we were presented, that it was the right thing for me. Maybe i'm a sucker and it really is just a scam, a very elaborate one, or maybe this guy has just thrown together a bunch of stuff he's researched and half-asses his way through recommending what someone who's placed their life in his hands should follow. Due to the incomplete nature of the information that we've been provided, sketchy communications from him, and odd manner of getting materials and supplements through another supposed patient; late, incomplete, already opened, my patience and trust in this whole thing has been shaken and am in serious doubt of it being safe. I went to get blood tests done today, which due to the nature of some of the extra screenings that this treatment from "Not-a-Dr. Pablo" requested, had to be done at the infusion clinic where I have gone for chemo as a normal lab couldn't do them and even this morning they were still trying to figure out exactly what the labs were, most of which they had never seen or administered before, and needed clarification on most of them before they could draw the lab to make sure it was right. Not being their fault at all but that of the source request; Dr. Pablo, the guy providing, well, proctoring the treatment. Just like the rest of his information thus far, the lab requests were vague and incomplete. This is kind of the last straw. We don't even know if we could get our money back but are feeling like we need to cut our loses and find another alternative. I'm really sick of not "getting what we pay for" from the very beginning of this whole fight. Chemo, now this. Why can't life or death situations be more simple?!

We haven't ruled anything out even though we felt we definitely needed to seek an alternative to chemo. Who knows, maybe i just need to go ahead with the next drug they would try, loose all my hair anyways and see if that one works. That being said, we're still going to consult with an actual naturopathic Dr., yes a real Doctor now, later this week, originally to supplement the therapy we started, but now to seek professional advise on what she would recommend from scratch and have also requested a distance consult to Dana Farber Cancer Institute in Boston at the prompting of friends of friends that have been treated there. I feel at a lose for knowing what the best route to take is, though we'll keep trying each path and coming back to the fork in the road to seek out the next when it doesn't work. It's a big fork now; getting lost in the world of medicine and natural remedies, to even remember when you last left off. We just need to keep the faith that God will lead us down the right path when it's time. Thanks for the continuing support to help us keep on keeping on!