This post is long, but I wanted to archive the emails I sent to friends and family about what was going on with Tyler, from the beginning (at least from the beginning of our awareness of the condition).
Thursday, December 8, 2011
I wanted to send an email to update on a little life curve ball… It feels kind of strange to tell in an email, but I wanted you to hear it from me.
On Sunday morning my brother called me to tell me that after a couple weeks of trouble with his asthma (when he laid down his breathing became increasingly labored, so sleeping was difficult), he admitted himself to the ER at UCSD. Long story short, they discovered a solid mass surrounding his heart and covering some of his left lung. After several tests and a lot of waiting, Tyler was diagnosed with Non-Hodgkins Lymphoma. Today, they will do a bone marrow biopsy to determine the stage, and I’m assuming they’ll start chemo immediately. Obviously, we’ll find an integrative physician ASAP to seek out IV vitamin C and nutritional medicine therapies, as well.
Tyler is doing well, he’s really calm, realistic and he’s being positive and determined. Obviously, we’re hitting the nutrition hard 🙂 and I’m glad to be out there. My mom has been here since Sunday, and I left for SD yesterday (Wednesday) after work and I’ll be here until Monday or so. I’ll be here to direct meals and overwhelm the doctors with nutritional biochemistry questions.
After plenty of tears and some profanity, I turned on “go mode.” (I know many of you can visualize this). As you can imagine, I loaded up the soup my mom made with turmeric, stirred in some coconut oil, crushed some rosemary… I’m sure you have a visual. 🙂 Tyler is definitely a proactive, courageous and intelligent man, and if anyone can handle this, he can. I’m headed to Whole Foods to get some food medicine 🙂
At this point, for Tyler’s sake, he did want this to “stay off facebook”…. but if you want to contact him, you can email him at firstname.lastname@example.org
I love you all and I appreciate your support (we’ll all need some sympathy and some jokes through this all, so don’t feel weird about asking questions or saying something you’re unsure about…). 🙂
wtf, here we go…
Saturday, December 10, 2011
I want to apologize for some of you who weren’t on the initial email. My brain wasn’t (and still isn’t) functioning fully. I am happy for you to forward this to anyone who you think would be interested, or you can send me an email with anyone’s name who should be added.
Tyler has been formally diagnosed with t-cell lymphoblastic non-hogkins lymphoma. It accounts for only ~2% of NHL diagnoses. After the PET scan yesterday, they determined that the cancer is active in the lymph nodes (to some degree, but unknown how much) and it is also in or around the kidneys (both sides). The lumbar puncture was apparently “abnormal”, but she didn’t say anything more than that. We are supposed to get those results sometime today. An internist was the one to share the news, so she was unable to say a whole lot (as she’s not an oncologist). She was enthusiastic about the fact that Tyler is young, active, fit (most/all of this general chem labs are normal).
I’m going to share the labs for those interested… others can ignore:
Lipids: TC 171, LDL 116, HDL 43 (odd because he exercises intensely 6-7 days weekly and drinks red wine), TG 88
hs-CRP: 33 (ref range is <5), so he is very inflamed. From what I’ve learned, this can indicate oral/periodontal disease, but Tyler’s teeth/gums are healthy, so it’s likely just a marker of the cancer’s inflammatory state.
Fibrinogen: 440 (slightly elevated). I’ll ask the doctor to order that again in a week to see how it changes. If it gets too high we might consider a proteolytic enzyme for the biofilm of the tumor. I’m not sure if that’s indicated at this point or with this cancer.
Liver enzymes: normal, however his ALT was elevated on the 4th and then came back into normal range yesterday
Thyroid: TSH was .7 on the 4th and then crept up to .9 the 5th and yesterday it was at 2.1… I guess his metab is revving up to fight the cancer…?
Remainder of CMP: Normal. His fasting glucose was mid-80s and his HbA1c was 5.3.
Still waiting on other micronutrients (Cu/Zn, Bs, vit D, etc)
His blood sugar is in good control, which is important in light of the fact that cancer’s main fuel is glucose (sugar)… [They give a glucose tracer to see where the activity of the cancer is in the body] We have him on a strict regimen that is feeding tyler’s healthy cells and leaving little/nothing for the cancer to use as fuel (grain-free, plenty of high-volume and high-quality fats and proteins, excessive amounts of non-starchy veggies, some beans/quinoa, berries (in small amounts)). He’s loved all of the food, so that does a Wagner heart good 😉
I have more nerdy updates from analyses by other doctors and health practitioners (mostly integrative doctors), and whoever is interested in hearing about that, I’m happy to share… Just email back and let me know. I can make a separate email…?
Tyler asked last night what he did to have possibly caused this, and I told him something that was an aha moment for me this week… I learned that ~70% of earth’s surface is covered in water. Well, interestingly, ~70% of our own body is water… It just solidified the fact that we are all one living organism. This earth is not something separate from ourselves. We are the earth and the earth is us, and the way we treat it is the way we are treating one another. I realize that our culture is set up this way, but when we drive our cars, and depend on plastics, and use excessively (hey, I’m just as guilty as the next person of all of this), and pollute the oceans, and on and on… we create an environment that is no longer matched with our genetics. We put a larger stress on our bodies, and make it more difficult for our cells/DNA to function properly.
I told Tyler that it was nothing he did… it is a mismatch in our genetics and our environment (which is both his internal environment and the environment within which we all live). Tasha said this well last night, but it makes me mad that he has to ask these questions. Actually, I said to a friend this week that I didn’t understand why people get angry with cancer diagnoses (we’re all dealt cards and we’re all faced with challenges… we should be able to take it in stride and fight through and move on). I can now say that I understand the anger. I have been mad that tyler has to go through this. However, I can accept the blessing/lesson/whatever… Tyler sees this too. He actually doesn’t see himself as alone in this. He believes this is something we’re all healing from. He’s right, and I’m so thankful he sees it this way.
Tyler is strong and we all go in waves of sadness and normalcy. I have had so many out-of-body experiences this week… This doesn’t happen to healthy, active, young people who live a seemingly cancer-free lifestyle. But, we plug on, and he’s doing everything in his control to fight it (swallowing capsules for me, being strict to his diet… honestly he looks at me before putting anything in his mouth).
There has been incredible out-pouring of love and support, which is what helps tyler get through… so, for that I am sincerely thankful.
Love and peace to you all,
Sunday, December 11, 2011
(I’ve divided the email into the general update and the additional science/lab tests, etc. at the end.)
Tyler’s oncologist visited us yesterday evening. He seems like a grounded and knowledgeable physician with much experience. Here’s Tasha’s succinct text update: 6-8 months of the strongest chemo they’ve got – regardless of staging. We’re treating to cure. It’s going to be a tough battle for Ty – starting Monday with 1 month hospital stay. Six days in the hospital once a month plus clinic treatments several times a week. Expecting some nasty side effects. Radiation will follow and then 1.5 years chemo maintenance. But, Ty is a nasty fighter and competitor. The chemo is called “Hyper-CVAD” chemotherapy. It’s a combination of 6 different drugs (with long lists of side effects). Tyler is disappointed that he’ll be unable to work, but he’s determined to beat this and I think he’s still taking it all in…
Many people have asked for his contact info. If you’d like Tyler’s mailing address, phone, or email, please leave a comment below and we’ll send it to you privately.
We’ll keep you posted. Tyler’s in the best mind-set that could be expected; he’s had a lot to take in. As Tash says (and is so true) he’s a fierce competitor (aka a “Wagner”). 🙂
Warning, nerdy nutrition stuff:
Expanding on the “mismatch in genetics and environment” rant from yesterday 😉 I actually brought out a blood test kit that we often use at work. It tests one’s genetics to be able to process toxins (the Cytochrome P450 system – both potential Phase 1 and Phase 2 polymorphisms). Many (if not all) cancers are associated with toxicity issues – this could be heavy metals, plastics, phthalates (pronounced “thalates”), styrene, and even viruses that are toxic to the system. If our body is ill-equipped to handle these toxins, then they can build up/wreak havoc on the body. Actually, it’s an interesting coincidence that the day before I came here I gave a presentation on genetics, nutrition and cancer (without knowing tyler’s situation, I had selected this topic to present on).
We (some consulting doctors, nutritionist and myself) are suspecting that tyler has an inability to methylate properly (that means he’s unable to transfer carbons as efficiently and effectively as is necessary to handle the above-mentioned toxins… since all of our bodies are made of carbon, it’s important to be moving carbon efficiently and accurately around the body. It’s especially important in silencing DNA that should be silenced and expressing DNA that should be expressed). The specific genes we’re looking at for this are the COMT and MTHFR. Other genetic polymorphisms are checked, and I’ll get to that later…
We are very lucky to have a conventional physician who is willing to take into consideration all potential methods of treatment. When asked about the potential to utilize nutritional therapies, like IV vitamin C, the physician asked for the literature to support the therapies. Since I work in a clinic with many patients seeking these therapies, I’m utilizing all resources (and PubMed and great KU friends) to help equip me with information to provide to the doc. IV Vitamin C can even be helpful with side effects of chemo in addition to being toxic to the tumor (when ascorbic acid is metabolized in the body it creates hydrogen peroxide that is toxic to the tumor in the extracellular space). We’ll see if this pans out…