Holistic Hillary Treatment
Are you ready for this?
I've finally hunkered down and tried to catalog the majority of the medications, both perscribed, holistic, and supplemental, that I allow within my body.
My theory is simple, anything and everything that I welcome into myself is part of a whole. That whole is me.
Anything that enters will stimulate a reaction within me that will reverberate throughout my entire system, like the proverbial butterful flapping its wings and causes a tidal waves accross the ocean.
The butterful is anything that enters my body, the tidal wave is my immune system.
I want to keep that tidal wave to dull, rocking waves. I'm trying to keep balance.
Treating myself with good whole foods,natural substances, and some extra TLC will decrease the immune response my body needs to mount when confronting anything external I chose to ingest.
Relatively simple, I guess?
I am writing this from my master bathroom. This is the epicenter, ground zero, for my health care practices.
It should be called my “office.” I’ve heard a great many men jokingly refer to their bathroom space and time as their “office.” Probably some man joke about the time they spend sitting, alone, reading, supposedly doing things that are meant to be done privately.
I think it may be a good excuse to get some “me time” in a house full of kids and pets.
I’ve hidden in the bathroom for this reason before too. I just needed a mini-snooze, a breather, from some sort of activity that was happening, but this hasn’t been happened recently.
Recently, my bathroom is where most of my health works takes place, day in and day out, at least for 20 minutes day and night.
I’m glad I was never a woman who needed ample time to “prepare” and “put their face on” since just the act of opening, swallowing, transferring, and organizing my pills and regimens takes in excess of 20 minutes each morning.
Many times I have left a friend stated, “I’m going to take my medicine” only to have them wonder around trying to find me or stare at me with an awe inspired, blank look and ask, “What are you doing , exactly?” or “What are you doing in there?”
I’m doing exactly what I said I was, taking my medications, a lot of them.
I think it’s time I shared exactly what I’ve been trying on myself to ease the plethora of side effects from my treatment.
Here is what I am doing to myself day in and day out. I thought it was about time I documented exactly what I do and how I feel it is working, not only because my health care providers would really like to know exactly what I am taking. I’m sure they’re going to be a little surprised at the extent of medications and alternative therapies that I have decided to use, but everything within here comes together to make me. I’m treating me holistically.
Like an assessment, let’s start from head to toe, shall we?
These products are for the obvious thinning and remaining bald spots after treatment has stopped and regrowth has started. They are meant to stimulate the scalp in inspire the growth of thicker, healthy hair. It’s working for me.
LUSH products from Lush.com: Cinnamon & Squeeky green solid shampoo
Styling- Paul Mitchell Tea Tree Styling Gel
My eyes have been significantly attacked by graft vs. host diseases causing severe eye pain, photophobia, and dryness. The pain experienced is likened to grittiness, as if sand as been thrown in your eyes. The pain can be so extreme that opening the eyes are not possible.
Both Right and left lower lid ducts have been plugged to retain moisture at Mass Eye and Ear by Dr. Dana. I have the option to plug the other ducts if the pain persists.
First- Optive & Sustayne Eye lubricating eye drops 3 gtt QID were used for breakthrough pain and dryness. These gtts are also be taken as needed above and beyond the scheduled 4xdaily.
Generic brands are ineffective and have been found to contain alcohol solutions which increase the burning and pain. I do not recommend using generic eye drops for eye lubricating problems. Neither does Dr. Dana at Mass Eye and Ear or Dr. C Burner at Lane Eye Associates.
Flax seed oil 2000mg BID from Barlean’s Organic Oil is taken to assist in rewetting the surface of my eyes as recommended by Dr. Carol Burner of Lane Eye Associates. This brand is America’s best selling Omega 3 and contains the highest Lignan content. This is taken prior to Breakfast and Dinner.
Restasis 0.05% Eye Emulsion 1gtt into both eyes every 12 hours was started mid-March. This generally takes 3 months to reach full effect.
Restasis is taken in the morning immediately upon waking. Then I shower, wash my hands, afterwhich I place my contacts. This is done to minimizeinfection risk.
Accuvue Oasys contact lenses, which function to retain moisture within the eye, were started April 26, 2009. I experienced immediate improvement of eye pain. With the Oasys lenses I have a 1 pain level on a scale of 1-10. These are worn from early am until bedtime, approximately 12 hours.
The Cleaning solution used for these rewetting contacts is Opti-Free Replenish. Contacts are placed in this solution over night.
For Eye Irritation: use opti-free replenish, Optive, or Sustayne Eye Gtts to alleviate the pain on a PRN basis. This gtts are placed in my eyes with the contacts in.
After removal of contacts, my eye pain increases to a 6 on a ten point scale and the frequent use of lubricating drops is necessary.
I will try Accuvue Oaysis lenses for one week. After the period of the week, I will try Air-Optic, which is also a contact lens specifically designed to assist in the rewetting process. I will compare the two brands and decide which fits my needs. The Accuvue Oaysis have made me happy and comfortable thus far.
The placement of contact lenses has given me the greatest relief of my symptoms. Upon removing my contacts, the gritty, irritated eye pain returns.
Oaysis contact lenses have also significantly improved my photophobia. Previously with the use of rewetting drops, I was unable to open my eyes in the sun without severe pain or sunglasses.
Photophobia has resolved.
Systemic Steroids likely had an effect in decreasing the symptoms of pain and grittiness in the weeks prior to my contact lens trial; however, steroids did not remove the discomfort in its entirety.
Rewetting lenses have. I think if safe, clean, practices are used I’ll consider contacts as a symptomatic treatment for the ocular pain associated with graft vs. host disease.
Toothbrush- Oral B Vitality Sonic
Toothpaste- Colgate Prevadent 5000 (1.1% Sodiom Fluoride) Dry Mouth. Moisturizing toothpaste available by prescription, contains 5000ppm Fluoride, SLS free formula, in soothing mint.
Mouth Kote Hydratant Oil: for oral hydration swish 8-10 seconds and spit. Non-prescription. Contains Yerba Santa
Mouth Kote Spray- PRN for dryness- completely uneffective
Orbitz Spearment Gum- increases salivation and decreases pain associated with eating and swallowing specifically improving the pain felt in my salivary glands.
Natural Dentist Healthy Gums Mouth Rinse (All Natural)- Swish for 30 seconds and spit BID for the protection of the oral mucosa (lining of my mouth) from ulceration in Peppermint twist, no alcohol or artificial sweeteners. Available at drug stores.
Dexamethasone o.5mg/5 ML elix- 1 tsp by mouth three times daily- Prescribed. Not tried yet. I do have.
Deodorizing- Natural Care Tom’s of Maine long lasting Lavender natural care
Sundercover 30SPF from Nature’s Gate Organics
Origins Make a Difference Ultra Rich Rejuvenating Cream (Expensive Version)
Lush Dream cream hand and body lotion (less expensive and equally effective, even on the face.)
0.1% tracloride cream topical BID (not as effective as original topical corticosteroid prescription)
MIX- Combine all three in equal parts; apply twice daily to contain GVHD with topical steroids, sun protection, and basic moisturizing needs.
Blistex lip infusion lip gloss in combination with topical corticosteroid creams to ease the chapped look and extreme tightening of the mouth. This has not been exceptionally effective.
Systemic steroids (prednisone) has been the best treatment for my lips thus far. Frequent use of Blistex Lip Infusion or Burt’s bees in combination with a topical steroid did provide minor relief.
Possibly a stronger topical steroid lotion (0.2%) in combination with an organic chapstick tub, such as burt’s bees, with sun screen would provide the moisture, direct steroid therapy, and sun protection necessary to symptomatically control the effects of GVHD.
I will try this in the future.
LUSH Dream Cream- lush.com
Origins Precipitation Extra
Babor Advanced Biogin Intensive Repair.
0.1% tracloride cream topical BID (not as effective as original topical corticosteroid prescription)
Hematological Specialist Prescribed Medication List: Dr. Edwin Alyea & Melissa Cochran, Dana Farber Cancer Institute, page (617)632-3352, ask for them by name and hold on the line
Prednisone 30mg PO Daily taper to begin May 7
Folic Acid 1 mg PO Daily
Oxycontin 10mg PO BID
Acyclovir400mg PO TID
Bactrim1 tab PO daily
Lexapro 20 mg PO Daily soon to be changed to Celexa 20mg PO daily
**Paul Matzkin, Claremont Family Physicians, Claremont, NH (603)542-2571, my PCP has made himself available to write prescriptions that cannot be called or faxed in. I have seen him for pain control.
Standard Process Hodgkin’s Protocol: Dr. Brendan and Terrell Klema, Charlestown Family Chiropractic, Charlestown, NH (603)826-5220
THYMEX 2 tabs BID prior to meals
Spleen PMG Holistic Supplement
Germany lymphatic Regimen: Dr. Ursula Jacob, Wesserberg Germany Medications, Jacob.email@example.com
Magnesium Glycinate 600mg PO daily for migraines
Omega 3 Fish Oil 2000 mg PO BID for healthy vascularization
Flax seed oil 1000mg PO BID to improve anticholinergic effects of therapy
Ultra Hepa Trope II 2 tabs twice daily (liver detox), The foundation for the function of these uniquely formulated nucleoprotein-mineral extracts comes from the antigen-antibody reaction that takes place during normal cell maintenance. The antigenic properties promote healthy cellular division, function, and growth. When a tissue needs support, at least a dozen different compounds are formed that can cause white blood cells to travel together toward the compromised area. They include degenerative products of the tissues themselves. These substances strongly activate the macrophage system, and within a few hours, the macrophages begin to devour the destroyed tissue byproducts. At times, the macrophages can also affect the structure of the remaining healthy cells. The bovine liver PMG™ extract in Hepatrophin PMG appears to neutralize the circulating antibody, thereby contributing to the maintenance of cellular health.
Quercitin-C 2 tabs twice a day after meals (Maintains blood vessel integrity • Decreases sensitivity to allergens • Reduces swelling and pain of arthritis • Promotes circulation • Reduces your risk of certain cancers •Antibacterial properties •Protects the skin from UV damage. See http://www.highlifeformulas.com/quercitin-c.htm)
Ctyozyme AD 1 daily (Source of neonatal bovine adrenal. Consider with chronic fatigue, reactive hypoglycemia, craving for salt, lowered resistance, flu, colds, hypotension, inflammation, lack of ligament strength, ridges in the fingernails and an inability to work under pressure),
Berberis Homaccord 10 gtt .5 hr before other meds BID (For the temporary relief of minor inflammation and irritation in the area of the urogenital tract including cramping, colic and discomfort. http://heelusa.com/) Dr. Lui of the Marino Center in Boston recommends the use of this as a natural anti-inflammatory to ward off cancer.
XRAY 30C 3 pellets sublingual (under the tongue) Twice daily. Remedy works not only for exposure to radiation, but also stimulates cellular metabolism and can perk up behavior and vitality, especially after anesthesia. Avoid using potencies less than 30c or greater than 200c unless you are looking to do comprehensive treatment, as they can bring to the surface other problems which have been suppressed.
Ambien 5-10mg Nightly PRN Sleep
Ativan 05-1mg Q4-6 PO PRN nausea or anxiety
Oxycodone 5 mg Q4-6 PO PRN Pain
Marinol 1 tab 3 x daily as needed for nausea/anoerxia
Triphala 1,000mg, 2 tablets nightly as needed constipation
Lact-Enz Dietary Supplement 2 capsules Daily prior to meals when increased (nonprophylactic) antiobiotics are necessary to maintain normal bowel flora.
Kytril 1mg PO BID PRN nausea
Peppermint essential oil infused in lotion for relaxation
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."