FYI – It’s ALOT of labor.
I’ve been dwelling from the Camino for about three weeks now, longer than I used to be away on the stroll, however time did that sneaky factor once more, and months of life appeared to occur in 18 days. Time distorts once you step away out of your regular routine. It extends your life. And I discover that coming back from journey helps me discover consolation in my every day habits and favourite issues – like the recent mug of inexperienced tea I deliver into the workplace for my morning writing sesh whereas snuggling into the blanket that has a bit of foot pocket to heat my ft. Going away helps reorder life once you get dwelling.
Simply what have I been as much as these previous three weeks, aside from rearranging every part to reside the lifetime of a author? Nicely, docs’ appointments, after all. It takes quite a lot of work to observe and heal from this incurable illness. Observe: lots of the individuals I’ve recognized who’ve handed from most cancers did so inside a 12 months of their preliminary analysis. I’m virtually at month 10…and proceed to really feel I might be within the minority.
So, within the spirit of oversharing…listed below are all the main points. Since getting dwelling, I’ve had:
An appointment to interchange my steel nostril ring with a glass one, so it wouldn’t intervene with my mind MRI the subsequent day
Metallic rings in noses are a problem for MRI machines. Did you hear in regards to the man who died when his massive steel necklace dragged him into an MRI room? Kirk can’t have an MRI as a result of he’s been a steel employee for therefore lengthy {that a} small piece is perhaps embedded in his physique, and will get ripped out when he approaches the large magnet. Yikes! Anyway, I ordered a nostril ring that might be simpler to take away for future scans as a result of the one I’ve now could be a full circle of steel with a ball on one finish. To take away it, I must twist it open sufficient to pop one finish of the put up from the ball after which pull the ring aside to make a gap large enough to twist it by way of my nostril. That hurts. And I couldn’t get the loop closed when placing it again in after the MRI as a result of my fingernails at the moment are breaking, and even a slight bump will trigger fractures and splits. I perceive it’s because they’ve lastly grown out to disclose the impact chemo left on my physique 9 months in the past. Additionally, Tegresso, my every day most cancers med, could cause weak nails as one of many unwanted effects.
A mind MRI
A motorized tray slid me right into a circle of magnets the day after I received dwelling. Normally, I see check outcomes the identical day in My Chart, and once I get them, I’m typically tempted to sort phrases or phrases that I don’t perceive right into a search engine (as you already know from this part: Deciphering a My-Chart check outcome in the midst of the night time with no physician supervision). However once I lastly did get the outcomes, there wasn’t something to fret about as a result of the tumors are nonetheless shrinking. THE TUMORS ARE STILL SHRINKING!!!
Labs
The day earlier than each appointment with my oncologist, Dr. Tiffany, I’ve labs drawn. My neutrophils absolute and hemoglobin are monitored, and now we have a pointy eye on my platelet ranges. One other of Tegresso’s unwanted effects is low white blood cell and platelet counts. Which means I’m extra vulnerable to infections. This time, most of my numbers had been much like earlier labs, however my liver enzymes had been up, which I attribute to all of the wine I drank in Spain. Nobody is anxious, although. I introduced up the outcomes with a number of of my docs, and all thought the well being advantages of consuming wine in Spain whereas I walked 170 miles outweighed the negatives; plus the numbers are nonetheless on the low facet of excessive. So these outcomes have been positioned within the “don’t fear” column of “unhealthy issues that may occur.”
A visit to the gynecologist
Since my physique received nuked with chemo and radiation initially of the 12 months, I haven’t had a interval, and was fairly perimenopausal earlier than (assume sizzling flashes and mind fog). I had my hormone ranges examined a number of months again, and located numbers hovering round non-existent. My doc prescribed progesterone and estrogen (each in a patch and cream type), and the change was dramatic. No extra sizzling flashes, a clearer mind, softer pores and skin, and as I described it sooner or later on the Camino, it felt like my physique was waking up, that I used to be coming alive once more.
My first Zometa infusion
Since I had so many tumors alongside my vertebrae from neck to pelvis and femur, I’m in danger for fractures. The swiss cheese impact of the hungry most cancers put me in a wheelchair till radiation might harden a few of the bones that will preserve me strolling, notably in my pelvis. However excellent news: the bone is slowly rising again now. The unhealthy information: mixed with the osteoporosis threat of menopause, I nonetheless have a fracture threat. Luckily, the hormones that work for decent flashes additionally work to strengthen bones.
Now Zometa is a bisphosphonate medication that alters bone formation and breakdown within the physique. This may gradual bone loss and should assist forestall fractures. Since my chemo port was eliminated in August, I’ll get my infusion the old style method – needles and tubes in my arm. Each three months I’ll head as much as the transfusion room at St. Charles Hospital to get a vein poked whereas trying on the Cascade Mountains. Again within the day once I labored on the artwork journal on the town, I made one of many first excursions of this facility when it opened…it was state-of-the-art, and hosted works of many native artists. I by no means imagined I’d be again a decade later to take a seat in a kind of chairs.
Dental clearance previous to taking Zometa is required as one of many nasty unwanted effects may very well be bone loss within the jaw, and people of us who’ve been handled with chemotherapy, radiation, or steroids is perhaps extra more likely to develop it. I received the dental clearance a number of months in the past, and I’ll be flossing recurrently, thanks very a lot!
A therapeutic massage
My neck continues to wrestle holding my head in the appropriate place. I particularly really feel it on walks and on the finish of the day. I anticipate my muscle mass tightened once I received dwelling and sat down greater than I moved, so when the therapeutic massage therapist discovered quite a lot of knots below my shoulder blades, I used to be grateful for the discharge.
An appointment with my naturopathic oncologist
Throughout my check-in with Dr. Neubauer, we mentioned ramping up the dosage in my mistletoe injections…the purpose is to have a 1” rash on the injection website more often than not. And in the event you don’t bear in mind from one among my earlier posts, mistletoe has a bunch of useful results, like serving to the immune system acknowledge and destroy the most cancers by activating tumor-killing cells akin to macrophages, dendritic cells and pure killer cells.
Certainly one of Dr. Newbaurer’s solutions this time was to extend to my calcium citrate every day. Extra calcium will offset a loss when the Zometa attracts the mineral from my blood to deposit it in my bones.
And now that my physique is in a steady state, she wished me to get one other set of labs to measure the degrees of copper and zinc in my blood. An imbalance could cause tumor progress.
Extra labs to measure copper and zinc
A go to to my palliative care physician
Dr. Blechman is great. This girl was the primary physician I might get an appointment with after coming back from Louisiana and my emergency surgical procedure after analysis. She instantly noticed the urgency in getting me in to see an oncologist, a lot in order that she walked down the corridor, had a number of phrases, and I used to be speaking with Dr. Schmit a short time later…chemo began the subsequent day. Dr. Blechman has my again; they each did. One of many first issues she shared with me once we met final week was that she, too, went on a Camino-style hike in Italy this summer time. Full with resorts and cafes and baggage transport… and he or she considered me and my Camino. I expressed my gratitude to her, and we shared a number of tears of pleasure. My ache could be very manageable proper now, and I’m at such a gradual place that we agreed our appointments any further can be TBD. Magic.
A visit to see my oncologist
I had a easy transition from Dr. Schmidt’s care to Dr. Tiffany this summer time when the most cancers wing at Summit Well being closed down, and Dr. Tiffany has been nothing however supportive of my current actions. On the appointment, we reviewed my labs and mind MRI, talked about Zometa, and coated a number of numerous different small points I’ve been having. All indicators level to stability, so I’m shifting from month-to-month labs to an each three month schedule together with my scans. Successful!
A bodily remedy appointment
Melissa Carlton is supportive and mild. She works on my shoulders, again, and legs – stretching, assessing, and figuring out tips on how to finest tackle my present aches and pains. Proper now, that appears like a sore and tight decrease again. Melissa jogged my memory that I had weeks of every day radiation pointed at that a part of my physique, so the stiffening isn’t a surprise, and carrying a lumbar pack for 2 and a half weeks in all probability helped set it off. The discomfort is bearable, but it surely additionally looks like a spring that’s loaded and able to pop, so the technique is to strengthen my core, use topical lotions like magnesium at night time to assuage it, and add in sizzling epsom salt baths and heating pads through the day. Melissa additionally needs me to strive carrying a lightweight backpack to see if a bit of weight on my shoulders would possibly assist each my posture and my decrease again. Lets do it!
An acupuncture appointment
The decrease again work continued with my acupuncturist, Kym Garrett. Once more, a educated, compassionate, and supportive practitioner that I’ve been seeing since early this 12 months. This time, Kym used her needles to assist ease my decrease again and shoulder tightness and steered different strategies of anti-inflammation. I do know I must eat much less inflammatory meals… I’ve slowly slipped sugar and refined flours again into my food plan currently (principally within the type of pastries and breads), so I wish to in the reduction of. I’m nonetheless taking so many capsules that I don’t wish to add one other except completely needed (see under). Ahhh, I nonetheless bear in mind the times once I didn’t take any. Most of my life, I’ve by no means wanted to take any remedy, so this new actuality remains to be an adjustment. My every day pillbox now carries 17 gelcaps and tablets that I take unfold out between morning, midday, and night time. Yikes.
A neurosurgery appointment
I’ve been seeing Dr. Tien for follow-ups on my neck surgical procedure, and since it could actually take such a very long time to heal (and I nonetheless have a collapsed vertebrae) he needs to proceed to see me each three months or so. Normally, I’ve an x-ray accomplished so he can see how the screws and mesh are doing in my neck, however since I had the mind MRI just lately, he was in a position to reference that and didn’t have any considerations, in actual fact he was fairly impressed with how my physique is therapeutic. Good job neck 🙌
So what medicines am I taking on this upkeep part? Issues preserve altering as my physique is altering, so this record of medication is a snapshot in time.
I’m taking 17 capsules a day, after which there are additionally photographs, powders, and lotions.
Mistletoe
Based on the Nationwide Most cancers Institute, mistletoe is among the most generally studied complementary and various medication therapies for most cancers. In sure European international locations, extracts produced from mistletoe are among the many most prescribed therapies for most cancers sufferers. (It is a Dr. Newbauer-prescribed remedy)
I give myself an injection of mistletoe on Mondays, Wednesdays, and Fridays, and I’ve been slowly ratcheting up the dose so I get an immune system response of a 1” rash on the injection website. Thus far, I’ve no different unwanted effects aside from the dearth of lively tumors.
Estrogen
Certainly one of my hormone vectors is an estradiol patch that I substitute twice every week. I place these small, clear disks of sticky under the belt, alternating between my left facet and the appropriate.
The opposite estrogen product is a cream that I take advantage of nightly on my woman components.
Magnesium
I apply a magnesium cream on my decrease again each different night earlier than mattress to assist it chill out through the night time.
Astragulus
I take powdered astragulus blended in water each day. This tonic helps my bone marrow, blood counts, kidney assist, and has proven elevated survival in medical trials. (A Dr. Neubauer remedy)
Mushroom powders
I put a powdered turkey tail and reishi mushroom combine into my espresso within the mornings (Observe: just one cup of espresso most days). Turkey Tail mushrooms are recognized for his or her excessive ranges of beta-glucans—compounds studied for his or her capability to assist keep a wholesome immune system, and the advantages of reishi mushrooms are listed as: helps immune well being and resilience, helps temper and emotional well-being, promotes restful sleep and leisure, helps power, vitality, and wholesome growing older, helps keep normal wellness and resilience to emphasize, promotes cardiovascular and circulatory well being and helps keep wholesome blood sugar metabolism. In fact, these advantages are from a label, however these mushrooms are Dr. Neubauer-approved. Observe: subsequent time she needs me to purchase the 5 Defenders model as a result of its 100% sizzling water-extracted course of. The recent water technique ensures that the powder accommodates greater than 20% beta-glucans, that are recognized for his or her immune-supporting properties, and it unlocks the total spectrum of useful compounds.
Nail polish
To assist harden my nails from the chemo and most cancers med side-effects, I’m now utilizing a transparent strengthening polish.
Now for the capsules:
Keppra
Since I had a number of seizures earlier this 12 months, I’ve been placed on this anti-epileptic drug. I’ve been pondering of coming off of it, and once I accomplish that, I’ll must keep away from driving for 3 months as a result of the dearth of keppra can even trigger seizures (ironic!). However I nonetheless have a few tumors round my mind – they’re shrinking, so I’m undecided if/once I’ll begin the tapering course of. After assembly with Dr. Tien he mentioned it was too early to cease taking the drug, and I’d must be referred to a neurologist for additional session.
Calcium citrate
As defined earlier than, I elevated my calcium consumption just lately from 600mg to 1200 as a result of my Zometa infusions. Calcium may help keep bone density and stop osteoporosis, and it additionally performs a job in muscle operate, blood vessel contraction, blood clotting, nerve transmission, and hormone secretion.
Vitamin D3
In experimental research of most cancers cells and of tumors in rodents, vitamin D has been discovered to have a number of organic actions that may gradual or forestall the event of most cancers, together with selling mobile differentiation, reducing most cancers cell progress, stimulating cell loss of life, decreasing tumor blood vessel formation, and reducing tumor development and metastasis. Vitamin D was additionally discovered to suppress a kind of immune cell that usually prevents the immune system from responding strongly to most cancers (supply).
Peak K2
I take this with each meal, as it’s proven to assist the activation of bone-building cells, is concerned in calcium distribution to bone, and promotes regular blood clotting and vascular well being. (A Dr. Neubauer remedy)
Tegresso
That is my every day most cancers med that I’ll take for the remainder of my life (or so long as it really works). It’s used to deal with adults with non-small cell lung most cancers whose tumors have a sure irregular epidermal progress issue receptor – that’s my mutation of EGFR19. It’s used to assist forestall my lung most cancers from coming again, particularly metastatic most cancers…that means it has unfold far and extensive throughout my physique. Some individuals change into resistant to Tegresso after a number of months or a number of years, whereas others have stayed on it for a decade. We’ll see how lengthy it lasts for me. Tagrisso works by concentrating on the EGFR receptor, particularly the T790M mutation that blocks the signaling of EGFR, which suppresses cell progress and induces programmed cell loss of life in most cancers cells with these particular mutations. Tagrisso is taken into account a focused remedy and isn’t chemotherapy, but it surely works effectively with chemotherapy, just like the rounds of pemetrexed and carboplatin that I had earlier this 12 months.
Boswellia
Boswellia serrata has been utilized in conventional medication for hundreds of years, notably in Ayurvedic practices. Its lively compounds, notably boswellic acids, are believed to contribute to its therapeutic results, together with anti-inflammatory and anticancer properties. (A Dr. Neubauer remedy)
Magnesium glycinate
Magnesium glycinate is fashioned by combining elemental magnesium with the amino acid glycine. This type of magnesium is very bioavailable, that means the magnesium is definitely absorbed by way of your small gut. It may possibly promote bone well being, assist regulate blood sugar, assist keep common coronary heart rhythms, amplify train efficiency, and cut back ache.
Progesterone
With out sufficient progesterone, as typically occurs in perimenopause, girls begin experiencing signs like irritability, nervousness, poor sleep, and fatigue, so progesterone helps to enhance these signs, and it helps bone and coronary heart well being too.
Meletonin
Whereas melatonin is best-known as a sleep support, it additionally regulates the immune system and tissue restore and has cancer-related advantages like growing survival charges, bettering the probability of responding to chemotherapy, activating the “self-destruct” course of in tumor cells, and blocking the flexibility of most cancers cells to develop new blood vessels and to unfold to different tissues. (A Dr. Neubauer remedy)
Senna
Due to all the above, I can have hassle with my bowels. Senna is an herb, scientifically often called Senna alexandrina, generally used as a laxative to deal with constipation and works by stimulating bowel actions. I’ve been taking this since my analysis, however Dr. Neubauer warned that extended use could cause gi parastalisis, that means paralysis of the abdomen. It’s a purposeful dysfunction affecting your abdomen nerves and muscle mass which might result in making your abdomen muscle contractions weaker and slower than they must be to digest meals and move it on to your intestines. So, I’m beginning to wean myself off Senna, and as an alternative take extra:
MiraLax
I’ve been taking extra MiraLAX powder (blended in water), which will increase the quantity of water within the intestinal tract to stimulate bowel actions.
Evidently all I’m doing to maintain the most cancers from regrowing is working, but it surely’s not simply by way of the docs’ appointments and medicines talked about above, both. I attribute my rising well being to those elements as effectively:
Walks
I take walks, virtually each day if I can. Residing so near the Deschutes River means I by no means should get within the automotive, and I make a loop on the river path most days. Certain, I might stroll one of many a whole lot of trails now we have on public land round Central Oregon, however once more, that will imply getting within the automotive. Why try this when I’ve a beautiful stroll alongside the river proper out my entrance door? Now that snow has began to fall within the mountains, I get occasional glimpses of that pretty skyline from the river path, too. In fact, typically I head out earlier than dawn to fulfill the day on its method up. That jogs my memory: winter is coming, and with that, my hopes to ski this 12 months. I received’t go downhill but due to my heightened fracture threat, however I can’t wait to cross-country ski and glide by way of the silent woods within the glowing snow.
Yoga
I’ve been going to yoga once more over the previous few months; the 6am courses are my favourite. The room is rarely full that early within the morning, and it’s heated to a balmy 90 levels the place the muscle mass virtually soften with our light actions. I don’t do each pose…I’ve to change a lot of them for my stiff again and compromised neck, however I’ve been in a position to loosen up a few of my joints…I needed to take virtually a 12 months off from my follow since getting sick, and luckily there’s a noticeable enchancment in my stability and adaptability simply over the few months I’ve been again.
I’ve been going to the identical studio for 15 years now, and wouldn’t it, Pam, my most cancers mentor, was my first yoga instructor there. I like my 6am yoga, the lecturers, and the acquainted faces I see week after week. The perfect half about Namaspa is that it’s inside strolling distance from dwelling, so once more, I don’t should get in a automotive. Are you noticing a theme right here? Actually, I didn’t personal my first automotive till I moved to Bend at age 32. I like a walkable/bikeable neighborhood.
Every day stretching
My at-home bodily remedy workout routines have been a lightweight carry thus far. A lot of what I used to be doing was aimed toward opening up my shoulders, serving to my neck discover the appropriate alignment, and dealing my higher physique, like bicep curls with one-pound weights. Now I’ve a collection targeted on my decrease again, and I’m motivated to do them each day with the promise of extra power and fewer ache. I do know I’ll want each to ski this winter, so I do my workout routines.
Meals
Most of the adjustments I’ve made in my life this 12 months revolve round meals. I’ve at all times eaten pretty wholesome, however now I pay way more consideration to my diet with the assistance of Dr. Neubauer’s solutions. I’m not consuming vegan or vegetarian proper now, however I nonetheless restrict my dairy consumption and keep away from purple and processed meats. Daily (or each different day) I attempt to have some:
Floor flax
Chia
Hemp seeds
Fruit (berries particularly)
Avocado
Dietary yeast
Inexperienced tea
Ginger
Broccoli
Broccoli sprouts
Nuts
And protein with each meal
I might go into the particular well being advantages of all of the above, however this weblog put up is already changing into novel-length, so I’ll allow you to do your personal analysis there.
Sleep
Since ending the steroids I used to be on originally of 12 months I haven’t had any extra issues with sleeping by way of the night time. What a aid! This physique wants all of these hours to work it’s inner therapeutic magic. I’m certain the sleep is helped by the 10mg of melatonin I’m taking each night time too.
Neighborhood
Participating in neighborhood actions, surrounding myself with mates, and laughing have all been extraordinarily essential to me this 12 months. A couple of issues which have introduced pleasure currently embody:
Attending BendFilm
Certainly one of my expensive mates, Adryon, is on the board of the BendFilm pageant which takes place in October every year. Adryon and her spouse Brooke at all times attend the pageant, and this 12 months and I received the double pleasure of watching a number of movies and catching up with them this previous weekend. Even higher? Adryon’s brother Aaron is a filmmaker, and has promised to assist me ought to I wish to take into consideration writing screenplays sooner or later. Aaron and his spouse Katrina had a bit of lady, Jules, a couple of 12 months in the past and I used to be in a position to meet up with each of them at BendFilm.
Volunteering with Central Oregon Land Watch
Most of the individuals I used to work with on the Oregon Pure Desert Affiliation now work at Central Oregon Land Watch, together with Ben Gordon, who employed me for the Oregon Desert Path job ten years in the past (Ben and his spouse Serena hiked the PCT in 2006 too, however we by no means met on the path!). My good friend Lorainne, who’s their Improvement Director, requested if I wished to volunteer at an support station midway on one among COLW’s enjoyable runs this week, so I joined her within the attractive fall sunshine to distribute water, bananas, and banana bread to the runners. Buddies, the conservation neighborhood, and sunshine? Signal me up! In case you are native, try the great lineup of occasions they’ve developing this fall. The Livable Future Discussion board might be internet hosting Chuck Sams, the primary Indigenous Nationwide Park Service Director and Cayuse and Walla Walla tribal citizen subsequent month. In November I’ll be attending a chat by longtime Excessive Nation Information contributing editor Michelle Nijhuis who will share insights into important environmental studying. I’ll miss the Chuck Sams discuss, however he’s our keynote speaker at subsequent month’s Oregon Outside Recreation Summit in Pendleton (on his homelands).
A sauna sesh
Certainly one of my besties, Carrie, has entry to a sauna and I’m going to partake along with her this week. There are an extended record of well being advantages to the sauna, and I’m excited to overheat and meet up with her. Carrie and I’ve weekly hang-outs, and her friendship has been an incredible reward to me this 12 months. Buddies are important to the therapeutic course of.
Extra playing cards and emails from you
Thanks!!! The love retains coming and I can’t say thanks sufficient 💖💖
Mutual support
I don’t have a lot, however when individuals who have much less and are affected by environmental injustices and their whole communities are misplaced to floods, like what is occurring in Alaska proper now, I attempt to donate one thing. You may assist too by contributing to the Alaska Neighborhood Basis.
Taking motion on behalf of my neighborhood, the atmosphere, and the nation.
Taking motion is a type of therapeutic. Doing something past paying consideration to what’s proper in entrance of my face has been resulting in spiraling despair currently, particularly because the dystopian nightmare is getting nearer and nearer to dwelling. So, I’m getting lively. I received out my paints in preparation to take part in democracy this weekend. I hope to see a few of you on the market!
Once more, I’m so grateful to be wholesome(ish) 10 months out from analysis, however the actuality is, two extra of my classmates from the Dunlap Excessive Faculty class of 1995 died this 12 months of most cancers. My finest bud Missy, died 2 years in the past from the identical actual most cancers that I’ve, thus far I do know two of us from that class which have survived…however there are such a lot of individuals I don’t find out about. Most individuals aren’t public about their well being issues. Does anybody know of a examine happening in Central Illinois in regards to the large variety of most cancers instances taking place in younger individuals? Apart from these already listed, Missy misplaced her first husband to most cancers, one other good friend’s husband died of most cancers, one other good friend’s sister and brother-in-law died of most cancers… all had been youthful than I’m now. Was it the spraying of alfalfa and corn fields? Was it radon within the floor? Was it air air pollution? Anybody? I do know, I do know, we’ll by no means know for certain as a result of the poison is coming from throughout us on a regular basis. It’s everywere. Even new child infants have microplastics of their our bodies.
A lady I’ve been following for a while now simply introduced her current most cancers analysis. Jen Gurecki has stage 2 breast most cancers and has been a tough charger within the out of doors trade for years. I’ve bought a number of issues from the ski and snowboard firm she began, Coalition Snow, and even purchased a basket from Zawadisha, a Kenyan-based social enterprise she began whose mission is to offer small loans to rural Kenyan girls to assist finance their livelihoods. She is sharing her most cancers journey over on her weblog Redefining Radical. You can too donate to her Go Fund Me right here.
Thanks for studying to the tip, you rock!
For the reason that commenting has been so buggy currently on this web site and an improve can be very costly, I’ve determined to share these posts on my new Substack the place commenting might be a lot simpler. So head over there if you wish to depart me a message. Observe: My substack is free, I’m not accepting funds at the moment, so be happy to decide on “no pledge”.
