I’m not dead yet, but damn close!
Thanks for your concern and support throughout this journey!
For those of you who are newcomers to my adventures, here's my abbreviated story:
On March 11, 2008, I was diagnosed with Ductal Carcinoma in Situ (DCIS), Stage 0. I opted out of the "standard of care," which included chemotherapy, radiation, surgery, and hormone suppression, and chose lifestyle and dietary changes (and college!) instead.
Seven and a half years later, on October 21, 2015, I was diagnosed with a recurrence, Moderately Differentiated Invasive Ductal Carcinoma, Stage IV. I have 2 lesions on the upper lobe of my left lung, one along my axillary tail (in my armpit), and one above my right clavicle, on a lymph node.
Again, I have opted for "alternative" (natural, non-toxic, effective) treatments over conventional therapy.
Because my cancer is PR+/ER+/HER2-, chemotherapy, radiation, and therapy have actually been eliminated from the roster, so I have hormone suppression in my back pocket as a last resort.
I don't have a prognosis, because I didn't want one. I know the statistics. And I know they're skewed. I know that my cancer is supposed to double every 60 days, and it hasn't. I know that most women with my cancer live, on average, for 1-3 years, after beginning treatment. I know that the average 5-year survival rate is 2%, and that the survival rate beyond 5 years is .02%.
I know that chemotherapy, radiation, and hormone therapy all cause cancer, while surgery spreads, or spills, cancer cells. I know that conventional cancer treatments shrink tumors and kill daughter cells, but leave stem cells untouched, allowing them to grow more aggressive, more calculating, and more prolific.
I know that quality of life trumps quantity of life for me, but that my daughter's milestones are paramount and I need to be here for prom, high school graduation, college graduation, job offers, marriage, babies, etc. So while I refuse to suffer needlessly at the hand of barbaric "medicine," I am willing to pull out all the stops and do whatever it takes - go wherever it takes - to ensure that I am around for another 60 years!
Long story short, I am pursuing an exhaustive list of alternative and holistic cancer treatments and therapies, after nearly a decade of research, capped off by approximately 5 hours/day of continued research since this last diagnosis, my own background in nutrition, and countless correspondences with experts, such as doctors, chemists, nurses, patients, survivors, naturopaths, researchers, and other scientists. My protocol is outlined below, along with my reasons for launching this particular fundraiser...
Today, I had a much-anticipated appointment with integrative MD, Dr. James Biddle, to discuss my case and his services, which include Hyperbaric Oxygen Therapy, Hormone Replacement Therapy, IV Vitamins (both C and D, as available), and Thermography. These are all treatments and procedures that I am familiar with through my research and have sought out intentionally. In modern medicine, these are considered CAM (complimentary and alternative medicine) treatments, and are usually administered alongside the standard of care to improve outcomes and ease symptoms. But for me, CAM is the only "M," and will have to stand alone.
To recap from my last update, my most recent appointment was with my oncologist on February 22, during which I was able to ask a series of 21 questions that I'd been compiling since my diagnosis. She answered most of them, mostly satisfactorily. But the take away from that last appointment was her parting statement: "If you were following a standard protocol, I'd tell you not to change anything." Meaning, whatever I was/am doing is working (at least to slow progression). According to my labs, scans, and pathology reports, my cancer hasn't changed at all since October 21. For those of you who have forgotten or have not been privy to this information, here is what I've been doing to treat my cancer (as new information becomes available, including how I feel with each treatment, and how well it seems to be working, my protocol is constantly tweaked):
1. 95% THC (Cannabis Oil, 1g/day)
2. 65% AKBA (Boswellic Acid/Frankincense, 2 capsules/day)
3. Vitamin C (1000 mg, 2 capsules/day)
4. Vitamin D (2500 ICU, 2 capsules/day))
5. Turmeric with Bioperine (black pepper, for bioavailability, 2 capsules/day)
6. Broad Spectrum Digestive Enzyme (4 capsules/day)
7. Multi-Species Probiotic (1 capsule/day)
8. Vegan Omega-3 (4 capsules/day)
9. DDR Prime from doTERRA Essential Oils (an oral oil blend for cell support, 2 capsules/day)
10. Alpha-CRS from doTERRA Essential Oils (an oral oil blend for immune support, 2 capsules/day)
11. Vitamin B12 (1000 mcg, once a week)
12. Breast Friend Essential Oil Blend from doTERRA Essential Oils (homemade: Frankincense, Lavender, Clove, Sandalwood, Lemon, Lemongrass, Tangerine, Oregano, Thyme, Rosemary, Ginger)
3. Added Oil/Fat-Free
8. Whole Foods (as opposed to pre-packaged/processed foods, not the grocery store)
9. No Refined Carbohydrates or Starchy Fruits/Vegetables (including potatoes, bananas, and plantains, except when in Costa Rica!)
10. No arginine (found in oats, peas, peanuts, and other foods)
11. Turkey Tail, Reishi, Maitake, and Shiitake Mushroom Extract
12. Green and Herbal Teas (mixed) at bedtime
1. Essential Oil Diffuser (using the Breast Friend blend)
2. Topical Essential Oils (Breast Friend on tumors, neck, and bottoms of feet, as well as a drop under the tongue and on the roof of the mouth)
3. Before my neck/back injury: moderate exercise, including yoga, dance, walking/hiking, and lower body-weight training (will get back into this next week, as my back FINALLY feels better)
4. Increased Sleep from 4/5 hours to 7/8 hours (this lasted 2 months, but I'm trying to get back on track)
5. Oxygen Purifying Machine (stopped using in January, due to bright light and terrible noise while sleeping...or not)
6. Start each morning with an 8 oz. glass of room temp lemon-ginger water (essential oils work great for this, too, for more potency)
7. Acupuncture (bi-weekly)
8. Massage (as needed)
We discussed this protocol in depth today, and he was pleased with it, overall. He said the very first thing he would have recommended is RSO (Rick Simpson Oil, or THC oil). He also recommends a low-fat, no-sugar, plant-based diet, but allows for eggs and fish for his omnivorous patients. And, of course, no alcohol.
Before I continue, I want to be very clear. Dr. Biddle is NOT an oncologist or a specialist of any kind. He is a internist, or general practitioner/family doctor, turned Integrative Doctor, out of need/demand. He wanted to make that point, repeatedly, undoubtedly for liability sake. We mused at how, in order to practice nutrition in NC, you have to be an RD or Nutritionist, but that they are fed all the dangerous propaganda that perpetuates disease, by encouraging the standard american diet, loaded with fat, sugar, salt, protein, refined carbohydrates, and chemicals. But, if you are a nutrition professional or expert, who is not registered, and you attempt to recommend a plant-based (or any other) diet to a patient or client, you can lose your job, your license, and/or your liberty. So he said he can make basic dietary recommendations, but can't tell me what to eat and what not to eat, specifically. He also told me he's absolutely sure that I know more than him on the matter, already, and that I probably also know more about breast cancer, research, and treatments. This man, because he has chosen to practice "alternative" medicine, has battled the medical board on 6 separate occasions and has, fortunately, come out on top so far. It's a very frustrating thing, trying to heal, in this current paradigm.
So that's what he's not.
But here's what he is: A graduate of the University of Missouri-Columbia in 1989, Dr. Biddle completed his residency in Internal Medicine in Portland, Oregon, in 1992. Dr. Biddle is Board Certified in Internal Medicine and also certified in Chelation Therapy, Hypnotherapy, Massage, and Reiki. His passion is combing the best of conventional and cutting-edge medical care. He has special interests in clinical nutrition, hormones, toxic heavy metals, and hyperbaric oxygen treatments.
He's simply a doctor who runs a facility that happens to contain the equipment and therapies I've been seeking, who is also willing to administer them, so long as there is no claim (or expectation) that they will "cure cancer." And I don't have any such expectation. These therapies that I'm pursuing are truly complementary to what I'm already doing, but I also feel that they are paramount. I don't believe they would work alone, but I also don't believe that what I'm currently doing is enough. My primary interests are HBOT, Vitamin C, Hormone Balancing, and Thermography. And here's why...
Hyperbaric Oxygen Therapy has been ineffective when used alone, but when used in conjunction with a ketogenic diet, the effects on cancer are astounding. Here is an excerpt from a published article from NCBI, with the accompanying link, if you're interested:
"KD (ketogenic diet) alone significantly decreased blood glucose, slowed tumor growth, and increased mean survival time by 56.7% in mice with systemic metastatic cancer. While HBO2T (Hyperbaric Oxygen Therapy) alone did not influence cancer progression, combining the KD with HBO2T elicited a significant decrease in blood glucose, tumor growth rate, and 77.9% increase in mean survival time compared to controls."
IV Vitamin C brings blood levels of C up significantly farther than oral Vitamin C, and the results are dose-responsive. This allows for a "therapeutic" level of Vitamin C to enter the bloodstream. Data has shown that ascorbate selectively kills cancer cells (via apoptosis and pyknosis), but not normal cells, using concentrations that can only be achieved by IV administration.
Thermography is a safer "alternative" to mammography. Thermography uses heat to detect cellular changes in the body, and is superior to mammography at detecting fast-growing tumors, while inferior at detecting slow-growing tumors. Dr. Biddle recommends thermography annually, and mammography every 3-5 years, depending on age and risk. Another advantage to thermography is that it utilizes a full-body scan.
And lastly, hormones, and this can get confusing, so bear with me.
As you'll recall, my oncologist(s) recommended "hormone therapy" as a primary cancer treatment, along with chemotherapy and radiation. That's the standard of care for (hormone receptor positive) breast cancer. This is a synthetic pharmaceutical designed to halt estrogen production, with the intention of "starving" the cancer. While this sounds promising, it's still a relatively aggressive treatment, in terms of physiological collateral and side effects. Essentially, it launches a patient into menopause, at an alarming speed, and then you just linger there - mood swings, hot flashes, night sweats, weight gain, body hair, balding, bone density loss, heart problems - indefinitely. It also doesn't "cure" cancer, but only hopes to slow tumor growth and proliferation. This is not that.
Hormone Replacement Therapy (HRT) is what middle-aged women do when they begin menopause naturally, to replace their estrogen (which is a necessary hormone in the body for metabolic function, reproductive function, blood health, organ function, etc). It's also what people - men and women of any age - do when they have a hormonal imbalance. And so many of us do!
I was alerted to mine when I was 27 and attempting to get a birth control prescription from my OB/GYN, who told me I didn't need it, because I had PCOS (polycystic ovary syndrome) and would likely never get pregnant naturally, but would require fertility treatments, IVF, and/or surrogacy, plus time, money, and pain (one month later, on birth control, I was pregnant, naturally).
I have a list of twenty one (21) symptoms that indicate hormonal imbalance, not to mention, um, breast cancer, which is pretty solidly linked to hormonal imbalances. I won't go into that list here; if you're curious, let me know and I will expound. But all that is to say that my symptoms point to the following:
1) Estrogen deficiency AND estrogen dominance. How? Even though I don't produce enough estrogen, I have more estrogen than any other hormone, allowing it to run wild and wreak havoc.
2) Progesterone deficiency. Progesterone is the female hormone that regulates estrogen. It helps increase production if you're low, and decrease it if you're high, and tells it where to go and where not to go.
3) Androgen overproduction. Androgen is a male hormone that females also have in smaller concentrations. Most of my symptoms correspond to this imbalance, which, on the surface, may seem irrelevant, but here's why it's not: Androgens are stored in fat cells and converted, by those cells, into estrogens.
So we have this magical trifecta happening: I'm over-producing androgens, which are converting to estrogens. So, even though I'm not really making enough estrogen naturally, my body is finding a way to produce it. But I don't have enough progesterone to regulate it, so it's like an estrogen free-for-all, initiating, promoting, and progressing cancer cell growth.
This is why I'm interested in hormone replacement therapy. Knowing that I actually need estrogen to function optimally, and that I'm not producing enough of it, and that what I am producing isn't being regulated, I have no desire to actively stop all estrogen production in my body. Not at 37. It's not natural. And it's probably the real root of the problem. It's probably the "internal environment" that was so primed to entertain the external triggers (dairy, TCE, stress, cigarette smoke, etc) that led to my cancer development. I want to address the foundation first. And I believe this is it. What I'd like to explore, therefore, is the option of reducing androgen production, increasing progesterone levels, and letting the estrogen fall into place after that.
All of this is very exciting and promising, but here's the clincher: health insurance companies don't cover integrative medicine (as chance would have it, they do offer a discount to medicaid recipients), so anything I do will be an out-of-pocket expense. And he was kind enough to break that down for me today. Here is what the individualized protocol would look like, and what it would cost:
1) Five Office Visits (over the course of 6 months)
2) Initial Case Evaluation
3) Education Curriculum, including Sustainable Nutrition, Shopping and Cooking, Exercise, Detoxification, Hormones, and Stress Management
4) Private Coaching with Nurse Practitioners
5) All Labs and Tests
6) All Supplements
7) Administrative Fees
The labs he'd like to order include:
1) Initial Blood Lab Panel
2) Repeat Blood Labs
3) Hair Analysis
4) Female Hormone Profile
5) Functional Intracellular Analysis 5000
6) 6-hour Urine Toxins
It would also include use of the Far Infrared Sauna (uses a section of the natural band of light that is not visible to the human eye, but can be felt as heat, in combatting toxic overload, detoxing heavy metals, pain relief, stimulating the immune system, managing stress, easing anxiety and depression, plus a host of other benefits that don't necessarily apply to my situation), as well as the rebounder (trampoline).
The total cost of this program is $5828. Yes, you read that right. It's exactly 1/5 of what one month of chemo would have cost (which would be needed for a minimum of 6 months)...except the insurance company would have paid for that one. And there are three payment options:
1) Paid in full, with cash, for a 5% discount: $5536.60
2) Paid in full, with a credit card for a 3% discount: $5653.16
3) 50% Paid up front ($2914), with 25% paid the following month, and 25% paid the 3rd month
This is not an impossible amount of money to come up with, except that we've already gone through so much, and continue to, just maintaining my daily protocol and our household/living expenses, without me working.
I have 2 weeks to make my decision, before he shelves my file and takes on another patient (he only takes 20 new ones a month, so he can give individualized attention - no waiting room, no exam rooms, no physician's assistants, just me and the doctor for 90 minutes, each time). That doesn't eliminate me from his potential roster, but it does put me back on the waiting list, and they are scheduling for the end of July currently.
In the meantime, Dr. Biddle did offer some changes and additions to my current protocol:
1) Increase Vitamin C to 6000 mg/day (bowel tolerance)
2) Increase Digestive Enzymes to 5 capsules, 5x/day (including the middle of the night, to ensure an empty stomach)
3) Increase Turmeric to 6 capsules/day
4) Add daily 81 mg aspirin, 3-5x/week (this has been shown to decrease the risk of METS by 60%)
5) Adequate Sleep (minimum of 6 hours/night decreases risk of METS by 62%)
6) Add CoQ-10
7) Add Melatonin
8) Add Green Tea Extract
9) Add Beta Glucan
I was in the process of adding sleep, melatonin, green tea extract, and beta glucan, already.
This appointment was beneficial beyond what he has to offer, but in streamlining my self-made protocol to be more effective, whereas I was just guessing on dosages prior, based on my own research.
PLEASE SEED UPDATES
Thank you all, again, for your love, support, encouragement, and generosity. I can't even begin to articulate how much it has meant to me and my family, how much it has helped, and how humbled I am.
Love to you all,
Julie, Anoop, Emma (and Raisin)
So, due to a hiccup in my plans, I'm having to recalibrate my trajectory.
As most of you know, I hosted a fundraiser on May 19th in an attempt to make a dent in the $52k it would cost me to attend the Hope4Cancer Clinic in Mexico.
It was a phenomenal turnout, with good people, great entertainment, and excellent food! We had a blast dancing, and Anthony fed us well all night long! The silent auction was a major success, with many things being sold on the spot. However, not nearly enough sold, and nothing went at its valued price.
How'd we make out? About 4% of what I need.
In light of the fact that I probably wouldn't be able to have 25 more equally successful fundraisers in the next couple of months, I decided to rethink my next steps.
The clinic is out. Unless some wealthy benefactor shows up anonymously and picks up the bill. So what are my "low-end" options? What haven't I tried yet?
So many things, really. First, I reconnected with MD Anderson in Houston. They have 7 immunotherapy trials happening right now. Well, they turned me away, explaining that I wasn't eligible without having had chemotherapy and/or whole-brain radiation. And the irony? I'm now too far advanced and too fragile for either treatment! Ha! Good riddance to ya.
So, short of a trip to Mexico, Latvia, or the Bahamas, immunotherapy is now off the table. Bummer.
IV Vitamin C is still high on my list, but it's very difficult to come by, thanks to some red tape related to compounding pharmacies and the inability of naturopathic doctors to gain access to the stuff.
I guess I just lay down and die, then, right? Let nature take its course? Accept the inevitable? Hell no!
Instead, I've been looking into the merits of functional medicine; an area of study I've been educating myself in for my nutrition practice. Really, it's what I've always done; it just didn't have a name. I called it holism, or holistic nutrition, where you treat the body - the patient - as a whole system, and not individual parts. And rather than treat symptoms, you find the root cause of the symptom(s) and address/eliminate that.
The result is homeostasis. Balanced hormones and function, healthy organs that work in concert, and your body's most robust ability to stave off, halt, and/or reverse disease by fortifying immune function and liver function, among other "miracles." We are DESIGNED to heal. Homeostasis is our natural state. We just need the proper tools to achieve and sustain health.
So last fall, I found a functional medicine doctor in Chapel Hill. His name is Dr. Gary Sharp and he's the founder and lead practitioner at the Plum Spring Clinic. I found him in my own research, but then was actually referred to him by my HBOT tech, who was one of Dr. Sharp's students in medical school. So that was cool.
I reached out several times in August and September, to no avail. After my fundraiser, I reached out again. This time, I was informed that they "don't treat cancer" specifically, and "good luck!" I retaliated! I'm not trying to treat cancer, after all. I have an oncology team that I'm very happy with. What I'm looking for is a complimentary, or adjuvant, wellness protocol that will support what I already have in place. I want to work on my whole body at once, while receiving the support of my oncologists, to attack this from every angle, in the strongest body I can muster. They responded favorably.
Now, while they don't specifically address cancer, what they do treat are the following conditions:
Obesity / Overweight
Healing Digestive Disorders
Irritable Bowel Syndrome
Depression, Anxiety, Attention and Sleep Disorders
Of this list, there are 5 conditions that can contribute to both my illness and my wellness. Cancer is a dynamic disease that is, regardless of type, driven by hormonal imbalances - the foundation of myriad diseases, including others listed, like obesity, chronic fatigue, fibromyalgia, autoimmune illness, digestive disorders, diabetes, and mood disorders, to name a few.
If they are willing and able to address those things, they will inherently be addressing my cancer. See? Clever.
With a hormone-driven cancer, that is ER+/PR+/HER2+ as well as ER+/PR-/HER2-, it's really difficult to find targeted therapies, but it's pretty obvious that my hormones are whacked out. I've known this my entire reproductive life: Low but dominant estrogen, no progesterone, and all the symptoms that go along with that excitement: PCOS, infertility, body hair, acne...
So it makes perfect sense to me (and has since the beginning) to fix THAT first. Problem is, no oncologist will prescribe progesterone (not even bioidentical) to a hormone-driven cancer patient. So I ordered my own.
But I've been too chicken to take it! It's like when I went vegan, but felt like I should still drink milk; I've been so brainwashed by the media and big corporations that my intellectual understanding of what's good and what's bad is clouded by what I'm told I need! Milk does NOT do the body good, and hormones do NOT *cause* cancer. If that were the case, every adolescent girl going through puberty would get breast cancer! Not so!
But I digress!
My new plan is to use the fundraiser money to develop a program with Dr. Sharp this summer, and continue improving my existing protocol, with proper diet, adequate sleep, appropriate exercise, acupuncture, PT, and massage (as able). I'm also beginning Transcendental Meditation "training" on 7/7, which I'm super excited about!
To that end, I'm changing my fundraising goal from $50k to $10k, as I was quoted a rate of between $1500 and $10,000 for this functional medicine practice, depending on the program we design and decide on. They work really hard to stay within a patient's budget, so that it doesn't induce additional stress, but they can get *something* done for *any* amount, so that's good.
I'm going to make an appointment for a consultation the week of July 9, as I will be in Chapel Hill for labs and scans anyway (finally! after 5 months!), and whatever money I have in hand by then will be my budget.
Whatever doesn't apply directly to my functional protocol will be used as continued support for yoga, acupuncture, PT, and other therapies, as they are out of pocket.
Thank you so much for your continued support. I know it's been a long haul and most of you (myself included) thought I'd either be dead or healed by now. I'm trying!
Happy Summer Solstice!
The total, for my advanced stage, surpasses their maximum: $52k.
This includes 3 weeks inpatient, all 3 meals for me and my chaperone, 250 therapies, including immunotherapy and high-dose vitamin C, 1 year’s supply of Home treatments, including equipment, and two follow-up visits.
The average cost of chemotherapy is $39.8k for a 4-week treatment program, mostly covered by insurance. With a guarantee to make my life miserable, and a near-guarantee to expedite my demise.
Does ANYONE have ANY suggestions/ideas how to make this happen within the next month or two? After that, I’m afraid, it’ll be too late - like Hospice too late. This is urgent, but we are coming from a position of me being unemployed since 10/15, my husband being unemployed since 5/16, and my mom being unemployed for even longer than both of us.
I’m out of options and in panic mode.
As an aside, Emma just offered me her $76 savings/allowance. And my mom offered to sell her house.
I don’t think these are realistic ideas.
•Takamine Guitar w/hardshell case
•Fiddle with canvas case
•A LOT of high-end camping gear
•Really nice bicycle
•Shoes for days (name brand, size 7.5)
•1978 Manual SLR Minolta camera with all the attachments, lenses, etc.
•Complete Reba McEntire collection
•Autographs from famous people
•Customized Nutrition Programs
•Ballroom Dance Instruction
Those are all of my assets. I own and have nothing else to offer.
Any takers or sharers?
Here is my latest - jammed-full - update!
My 3-month scans were scheduled for March 13th and 14th. This would have been my MRI and PET, followed by a clinical meeting with my oncologist to review both the scans and my options. Pretty routine.
But when we arrived at 8:30 PM, after a 3.5 hour drive, we were informed that my doctor was out sick and canceled all of my appointments...without notice. After some fancy footwork and a lot of email/Phone/text/page correspondence between several powers-that-be, they
were able to get me in for my scans at
11:00 pm and 12:00 am.
Unfortunately, I was not able to meet with an oncologist to review them, so we headed back to Asheville the next morning.
I was expecting to hear back from my Dr. to discuss my scans, but figured “no news was good news.” When I hadn’t agate several days.
I’m the meantime, I had developed symptoms associated with sudden onset IBS. This was following a weekend of indiscretionary eating, so made sense.
When my symptoms worsened, I made an appt with my GP, who determined, after blood labs that indicated elevated lipase (a digestive pancreatic enzyme) that it was, in fact, pancreatitis. The treatment for this is, essentially, a liquid diet. I didn’t do the best job at that, as I was still attempting to add bulk, fat, and fiber to my meals, both to address my cancer and to feel full. Bad idea.
My oncologist called last Wednesday (a week after my scans) to inform me of all the fun things that were happening in my body.
The good news? All existing conditions and symptoms were stable. The tumors, the swelling, the blood work were all good. However, I had 2 new lesions: a small one on my brain and a 1cm bugger on my liver (it’s my first liver tumor, folks. Let’s give it a warm welcome!)
In addition, she confirmed my elevated lipase and pancreatitis.
But wait, there’s more! See note to my colleagues at the Clinic (where I work) for the riveting conclusion:
“So it’s been an interesting and eventful handful of days, and it’s time to let you in on it.
As you know, my suspected sudden onset IBS turned out to be pancreatitis, which I found out last Monday, the 19 - after 8 days of IBS symptoms.
Things seemed to be trending up after that, as I went full liquid diet for a day or two. But Thursday morning, I passed out on the toilet.
I was out for a few minutes, but was conscious in time to hear my husband call my mom and 911. My mom, who just flew back to NY on Monday, got immediately on a plane in Syracuse, and flew from 8:45 am - 11:30 PM (via 2 layovers) to get back here, while my stepmom, who was leading a training meeting for Dale Carnegie on Long Island, walked out of her meeting and was here by 4:30 pm.
I was in the ER at Mission from 8:30am-5:30pm on Thursday.
When I arrived, I was hypothermic, drifting in and out of consciousness. I remember everything except the ride to the ER and being changed into a gown upon arrival, though I did hear a nurse say “let’s get her into a gown,” and then noticed I was wearing one later.
The doctors were afraid I had either a collapsed lung or a pulmonary embolism, so they took labs, did a chest X-ray, and a CT scan.
They saw the fluid on my lungs that has been there since September, albeit more pronounced now, but nothing else new or concerning. They offered to admit me for monitoring, and to ensure hydration and nutrients, but because I was stable, eating and drinking, they discharged me.
Never had a fever, thankfully.
It’s been a really rough recovery, and the final verdict was that I had probably fainted as a result of dehydration (from pancreatitis bowel movements), exhaustion, low BP due to low O2), and bearing down too hard on the toilet, activating a vegus response.
Nothing life-threatening at discharge.
However, in light of this episode and the following, persistent symptoms, I *have* decided to go a head with thoracentesis, or syphoning of my lungs, so I can regain full lung capacity and get back to a normal life that incorporates physical activity.
Unfortunately, the only day the UNC pulmonary team operates is on Tuesdays, so I’m going to have to drive to chapel hill Monday night for a Tuesday appointment.
It’s a quick, 15-min, outpatient procedure with minimal recovery time and low risk of complications, but it is a 3.5 hour drive and I will have 2 days of not lifting more than 5 lbs.
I’m definitely on the road to recovery, as my pancreas seems to be less angry, and even my breathing has improved, somehow.
I’m confident that, once this infection is gone, my lungs are clear, and my lymphedema retreats (all within the next 1-3 weeks), I’ll be back to 100%. Well, 100% cancerous, that is.
I’m also revisiting the idea/possibility of going to an in-patient integrative cancer clinic in CA/MX, as it’s really the only option I haven’t pursued. I think it’s time.
To that end, in addition to keeping you all informed, this update serves to request further support in any form.
Our 2018 deductible hasn’t been met, and my little trip to the ER cost a pretty $6400. All of my appts, right now (including office visits, specialists, and alternative healing) are out of pocket.
And I’m not sure what this clinic would cost, and I probably can’t realistically get there till the end of summer. Once I have more info, I will share it.
I’m going to change my goal amount in here to try to get these things covered.
Thanks for keeping us in your thoughts.
Please share my story.
Julie and Family
Hi friends and fam!
Evidently, my last update was posted following my last scans, ca 12/14/17...
My next scans are scheduled the week of 3/12, just a week after my daughter’s 12th bday and exactly 10 years from my 2008 diagnosis (3/11/08).
April 21 will be my 2.5 year mark for this current journey. And I have to say, at the risk of counting my chickens, I do feel a turnaround recently!
That seems funny, coming on the tail end of the flu and cellulitis, and mid-lymphedema flareup, but I do believe my body is finally healing, naturally, and trending up!
I use little markers to inform me of changes in my health - my visible tumor is the best indicator, of course, but also things like energy, strength, stamina, focus, headaches, appetite, body shape, skin (color and texture), odors, perspiration, amount and quality of sleep...these are just some of the clues I use to tune in.
And based in those, I’m in a pretty good place. I see skin conditions that indicate hormonal imbalances, bloating that indicates poor diet, lymphedema that indicates blockage, and a flat ass that indicates no exercise...but in spite of all that, and my month-long lethargy/inactivity, I feel really good. None of my usual aches and pains, to which I had become desensitized. No neurological symptoms that were accompanying my brain tumors, no points on my body where I can *feel* (sense) my tumors, like the ones I could feel in my hips and ribs at various times.
I’m enjoying life a little more, and contentedness comes more easily, though I’m sure that’s largely to do with my escape to NYC and having a clean house for 2 weeks...I’m noticing silver linings and lights at the ends of tunnels, or as my mother would say, “at least...”
I’m enjoying Emma’s company more, and finding more patience. Having some fresh air, sunshine, and a good friend visit several times last week did wonders for my health and disposition and, in turn, my parenting. Although, Emma *did* confess, while in NYC, “I love you, mom, but I like you better in New York. You’re nicer and happier.” True story!
I don’t ha e a legitimate medical update to share, but I *do* have some exciting news!
After 24 years of informal study, 5 years of academic study, and 10 years of practice/experience, I *finally* have a job in one of my fields, working for someone other than my self!
On Monday, March 5, I will officially be part of the Epione Clinic for Integrated Healing, as their resident Nutrition Therapist, working alongside other qualified holistic practitioners, lead by our fearless Dr. Lulu Shimek, M.D.
If you know me at all, you know this is a BIG DEAL - to have a job and a purpose and a project, outside of healing myself and keeping house. My friend, Sarah, reminded me tonight how much I, not only LOVE, but literally NEED to work, and be overwhelmingly busy. And I’m so glad there are still people out there who only knew and remember pre-cancer Julie, to remind *me* what I’m capable of, and what makes me tick.
I can’t say I necessarily have a newfound zest for life just yet, however, as there is a caveat (as there often is when something seems too good to be true).
You see, this clinic runs much like a salon or spa, where the practitioners essentially “rent” an office (booth, etc).
So while Epione will provide training seminars, office space, administrative support, advertising/promotions/social media/marketing, utilities, janitorial services, office supplies, workshops/classes, access to the community room, a full kitchen, and public prominence, they essentially get a percentage of my income...only they get it up front, like rent. Plus a deposit.
I’m basically a contractor, but we all work together as a team, in cohesive office environment, not like a co-op. And I get to set my own schedule (Mon-Fri 9a-8p).
This is an amazing opportunity for me. I finally get to give back to my full capacity, allowing me to take on more patients in need of nutrition therapy - it opens up a whole new world and will allow me to reach more demographics. It gives me purpose again. It requires my brain. It gets me out of the house. This will heal me.
I’ve been saving money from holiday gifts, GoFundMe donations, refunds, returns, consignment, and sporadic Nutrition consultations, in an effort to build my practice; ie. finish editing my website, print and distribute my literature, conduct a workshop, take out an ad, etc. None of that is necessary with this new partnership, as they provide these things indefinitely. And I have just enough to pay my March rent!
However, I do not have enough for the deposit. And I don’t even know how much it is yet, because I’m still waiting to see the contract and all the other legal work. I’m crossing my fingers that this isn’t a hinderance.
Once I become established at the clinic as a practitioner (paying deposit + March), having just ONE patient a month will sustain my practice and provide a VERY modest take-home. Having just 4 patients a month would cover my rent, my cancer care, and my groceries!
I’ll be receiving my HIPPA agreement, contract, NDA, and my business cards, clinic email, and webpage presence this week. I have not signed anything yet, but I fully intend to. I HAVE to have my own income again! So please send all that good stuff you can muster, and hope that my “startup cost” is within my tiny budget, or that they might be willing to give me a draw in future earnings!
One of these days - and soon! - I’m not going to need a GoFundMe page anymore, either because I’m making money, or because I’m healed (I’m pulling for both!)
Love you all! Will check in after my scans! ❤️
This is Julie's mom, and I would like to express my gratitude to all the folks who have supported my daughter's cancer fight. It is amazing to go through this list and see all this. I wish you all well. (I hate to miss anyone, but I want to try to cover everyone by name. Note: I know you have done this out of caring and not recognition, so I have listed couples' names separately for privacy.) Lianne C, Julianna S, Kalina M, Laurel Loves Ya, Amanda C, Jane K, Julie M, Katherine M, Philip T, Michel C, Roen B, Stuart E, Rachel M, Monroe S, Bob L, Carolyn S, Elaine T, Kelly Jo F, Steve W, Jennifer W, Caitlin F, Steven B, Meagan D, Caitlin S, Larry and Jayne, CJ E, Amy L, Carolina B, GG E, Tai O, Chrissy M, Bunk, Nancy S, Suzanne, Juliano family, Rachel C, Monica I, Anita W, Judy M, Graham S, DiAnna R, Greg R, Elizabeth S, Robert G, Melanie S, Linda G.D., Lissa T, Tamara M, Nick K, and Anonymous. You will have my gratitude always.
Ok, by update two I was already thinking to myself, "Wow, she's a great writer". Then wondering if you had done any professionally. I think you would be great!