Almost eradicated in the 1940s with the use of cod liver oil given to children and encouragement to get out in the sun and play, it was so rare in the 1960s, when I had it, that when my two cousins had it apparently made the papers. My own case didn’t but I expect it drew attention from the GP and welfare services and had some relationship to me being taken into a welfare centre program for at risk children from 6mths old until I was 2 and a half.

I had apparently had jaundice at 6 months old (you can see I’m ‘tanned’ in the pic at 4mths old, in fact I’m actually a very pale person and don’t tan) and colic and recurrent infections but I was never told about the Rickets. Probably because in the 1960s such cases would instantly have flagged ‘neglect’. By 2 and a half I had spent my weekdays being fed and in the sunshine of Northcote Day Nursery (at that time, 1965, it was a welfare program for at risk children, today it is a regular nursery) so if Rickets had merely been an episode in my infancy then all that should have remained would have been the bone deformities.

But at 2 and a half I was in a three day hospital assessment at St Elmo’s hospital. According to my father and my aunt, I was there primarily because of queries as to whether I was deaf or had leukemia (as I didn’t respond and had easy bruising, bleeding gums and my eyelashes coming out). The result was I was diagnosed as psychotic, infantile psychosis, which is what autism was considered to be in the 1960s. Was Rickets unrelated?

According to my father and aunt there were other developmental delays. I struggled to stand or walk (not surprising with Rickets) but was also late with toileting, which I managed by the age of 3 and a half. I remember I had shoes I knew as ‘click clacks’ from the sound they made. I had them from around age 4 to 6. They were heavy leather school shoes with press down ‘caliper’ style metal buckles that didn’t leave any room for my feet to twist. Not sure what did the trick but I obviously came to walk fine.

The developmental issues went together with physical health issues. I remained on fairly constant antibiotics for recurrent infections and as an adult was diagnosed with the primary immune deficiencies, food allergies and food intolerances I’d apparently had all my life.

The Q angle of my knees in the above picture was 25 degrees. The normal Q angle for a female child aged 7-8 is 7-11 degrees.

At age 9 my teeth were horrendous and I required fillings to most of my teeth. My mother was told that I would probably have false teeth by adulthood and that I had a calcium metabolism problem. She, herself, would tell people that when pregnant with me she had lost all her teeth so there may have been some truth in this. With her being an alcoholic when I was born, she was likely already D or calcium deficient but its equally possible that with two cousins developing Rickets in the 60s when I also did that it may have been more than just us both being born to alcoholic mothers. They may well have already had their own metabolic disorders. With being on supplements since age 9-11 I got to keep my teeth into adulthood though they were yellow and pitted and so I have veneers covering them top and bottom so instead they present a ‘picture of health’.

At age 9, I was the second shortest girl in the school. I may have been 3ft 3″ as I remember being 3ft 3″ in grade 3, so 39 inches, the average being 47. So was put on zinc, C, multivitamin-minerals. As a result of grew to 61 inches (5ft 1″) by age 12 with associated severe bone and joint pain. and was put onto zinc, vitamin C and multivitamin-minerals and three years later I was normal height at 5ft 1″ but with all the expected severe growth related pains of sped up sudden growth. I was also diagnosed with language processing disorder and the treatment of me changed accordingly and the combination of the nutritional interventions and communication interventions meant that by age 9-11 I went from 90% meaning deaf to only 50% meaning deaf and moved accordingly from echolalia to producing progressively functional communication. I had been put through intensive ballet training from age 5

to age 9 which hopefully improved bone strength for me but it certainly train me to support my spine with well developed thigh and lumbar muscles and taught me to turn my legs out which hid my now longer bowed legs. With spinal degeneration in my 40s, I’m glad of the supplements and ballet that might otherwise see me now with a far higher level of issues than I’m tackling.

As an adult I was diagnosed with a range of food allergies and intolerances, among which was casein intolerance. Had I been unable to digest cow’s milk in infancy (I was left with cow’s milk bottles, not breast fed) this may well have as easily contributed to my Rickets as having been reportedly left in my bedroom for my first 6 mths, so without adequate sunshine.

In spite of inability to have milk products, in adulthood, I had a diet that was rich in D and calcium and was perplexed that in spite of being on fish oils, eating chicken and fish and spending adequate time in the sun daily without a hat or suncream that I was D deficient. I went on to vitamin D drops and this normalised in my next blood results by the time I was diagnosed with breast cancer.

My case is only an anecdotal one but an extensively documented one nevertheless. Rickets, once an eradicated disease in modern societies is now back in epidemic proportions thanks to over zealous reactions to fear of skin cancer and lifestyle changes. Children who were once playing out in the sun without hats or sunscreen, play indoors or under sun shades whilst slathered in sunscreen. Children now rarely play in the street or walk to school.

Sure, skin cancer is real, but most skin cancers are basal cell carcinoma, essentially cosmetically harrowing but won’t kill you, squamous cell cancers generally start as harmless solar keratoses that are commonly picked up and gotten rid of before they develop into potentially deadly squamous cells, and melanoma, undoubtedly deadly, accounts for only 6% of skin cancers. Other allergies, immune problems, life long back pain and spine degeneration. Sometimes we need to get the overview, not fixate on a single detail. Its about balance.

With advancements in the study of the health issues of children with autism, new studies are finding a range of gut, immune, metabolic anomalies related to developmental delay and associated neurological, sensory perceptual, sensory integration, communication and motor planning development issues. Combine this with a set of personality traits predisposing a child to respond ‘autistically’ to chronic stress, disability or information overload and once those responses have become neurologically patterned, automatic and integrated into the child’s identity, strategies, adaptations and responses to the environment by age 3-5 and you may well have a recipe for a presentation and diagnosis of autism.

An article in The British Medical Journal, Vol 1, N.o 1379, in 1887 (yes, I did mean 1887, not 1987) mentioned impact of Rickets not only on bone development but on ‘derangements’ of the spleen, liver, heart and digestive system and urged for medicine to not overlook the neurological impacts of Rickets reported as far back as the mid 1800s, which included epilepsy (seizures, including absence seizures that may look like staring spells), Hyperesthesia(multiple sensory hypersensitivities), muscle weakness, tentany(causes involuntary muscle contractions and twitches) and ‘mental backwardness’(ie developmental delay, information processing disorders and learning disability).

It was still being discussed in 1939, 4 years before Kanner would coin the term ‘autism’. To quote from a recent article in Psychology Today:

“To my knowledge, the neuropsychiatric symptoms of rickets have not been studied in the modern era. However, at least two old papers have addressed it, both published before Kanner described autism in 1943. Both papers describe ‘weak mindedness,’‘feeble minds,’‘mental dullness,’ unresponsiveness and developmental delays. Even more intriguing, both papers report that the mental condition in rickets improved with vitamin D.”

you can read the whole article article“>here.

Whilst vitamin D levels are essential to normal brain development, the brain’s development, resilience and nutrition also depend on the gut (colon), immune, detox (kidney), blood sugar balance and enzyme production (pancreas).

“The VDR (vitamin D receptor) is present not only in tissues that regulate serum calcium, including the small intestine, bone cells, and kidney, but also in essentially all tissues and cells in the body, including brain, colon, breast, prostate, pancreas, heart, skin, skeletal muscle, monocytes, and activated T and B lymphocytes (essential parts of immune system function)” (1, 20–22, 24). http://www.jci.org/articles/view/29449

With the near eradication of Rickets in developed countries by the 1940s, all this history of knowledge and its potential relevance to autism was probably lost until around the 1970s skin cancer campaigns added lack of sun exposure to the lives of children who had never “done” cod liver oil as grandmothers had, often with dread and off the spoon, in the 1940s and 50s.

Today premature babies who would have died in the old days of daily cod liver oil, commonly survive. Yet many are born with D deficiency and in spite of this are given heavy vaccination regimes that such an undeveloped, unregulated immune system would perhaps be far more at risk of being overwhelmed by. Vitamin D deficiency impairs glutathione metabolism, which is essential for detox function. In a more heavily polluted society than in the 1940s and 50s, those with D deficiency could today more easily become further neurologically compromised through toxins they can’t detox from heavy metals and other toxins (probably including salicylate, a natural plant toxin) at the rate of most children.

Add to this a lack of breast feeding, lack of good bacteria in our now pasteurized milk and plants selectively bred to have higher and higher levels of the natural plant toxin, salicylate (because it deters insect attack) and you have a range of further exacerbation to gut and immune health in what may already compromised child. Then there’s the question of no standard testing of infant’s ability to digest lactose or casein so those who would also be at risk of Rickets that could be picked up before it wreaks havoc. There is also subclinical Rickets and inherited causes of Rickets.

The physical signs of autism are already widely noted and the similarities with vitamin D deficiency in Rickets are very strong. The differences may well reflect some of the additional flow on effects of D deficiency in our modern society. We have more polluted, toxin loaded, highly vaccinated, and more sunshine depleted infancies since the 1970s-80s sun phobic modern world than those writing about Rickets in the 1940s could have imagined.

But if children with autism had Rickets wouldn’t they all show the bone deformities so obvious in those with Rickets? It’s a great question. But keep in mind that gestational Rickets (during the mother’s pregnancy) means the fetus is still floating in fluid in the mother’s womb. The fetus has not yet sustained weight on their legs and the gravity effecting the arms in children with Rickets may be completely different whilst one has only ever floated, essentially weightless in fluid. What about the forehead? Do children with autism tend to have the protruding forehead seen in children with Rickets and associated with scull formation? The answer is, yes, people have noted this, particularly in Fragile X, one of the most common forms of autism. The flat feet in Fragile X is also a known sign of vitamin D deficiency. Large heads seen in people with autism also occurred in children with Rickets (known as rickety children) as per the following text from the mid 1800s:

“Scrofulous and rickety children are the most usual sufferers in this way. They are generally remarkable for large heads, great precocity of understanding, and small, delicate bodies. But in such instances, the great size of the brain, and the acuteness of the mind, are the results of morbid growth. Even with the best of management, the child passes the first years of its life constantly on the brink of active disease”. source:http://www.freefictionbooks.org/books/t/17810-a-treatise-on-anatomy-physiology-and-hygiene-re?start=191

In this (before Ricket’s was better understood) they wrote that when these precocious rickety infants then lost all their abilities and became ‘imbecile’ for the rest of their lives they believed the parents had essentially worn out the Rickety child’s brain. But the accounts do mirror what today is seen as ‘regressive autism’:

At what age particularly is excessive and continued mental exertion hurtful? Instead, however, of trying to repress its mental activity, the fond parents, misled by the early promise of genius too often excite it still further, by unceasing cultivation, and the never-failing stimulus of praise. Finding its progress for a time equal to their warmest wishes, they look forward with ecstasy to the day when its talents will break forth and shed lustre on its name.
But in exact proportion as the picture becomes brighter to their fancy, the probability of its being realized becomes less; for the brain, worn out by premature exertion, either becomes diseased, or loses its tone, leaving the mental powers imbecile and depressed for the remainder of life. The expected prodigy is thus easily outstripped in the social race by many whose dull outset promised him an easy victory”. source:http://www.freefictionbooks.org/books/t/17810-a-treatise-on-anatomy-physiology-and-hygiene-re?start=191

Further, Subclinical Rickets would not show the overt signs and would only be picked up on more careful scrutiny and testing.

In terms of autism, understanding of the prolific effects of early D deficiency may significantly advance the field.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Rickets, vitamin D deficiency and autism

The allergy clinic was run by qualified medical doctors. They injected me with a small amount of salicylate then measured the size of the histamine associated reaction. They had a scale of measurement for these bumps which went up to a score of 22. My score for salicylate allergy was 22. Ah, so that’s why aspirin swelled up my hands, feet, face and neck with edema!. I went home with a diet that was gluten free, casein free, no soy, low phenol, low salicylate and no refined carbs. I had no family support, no counselor. The withdrawal was horrendous. I made it and within 7-10 days I was becoming markedly better on all fronts. I remained relatively loyal to my low salicylate life for 21 years until I was 47 years old.

When I was 47 years old the immunologist told me in March that I was allergic to soy and peanuts which were both legumes. I went off all the legumes, tried some pea soup and had severe gastrointestinal problems (allergies sometimes won’t show until you are off all sources of the allergen before you retest). I waited a few weeks, tried pea soup again. Same thing. Legumes were out. Having unburdened my immune system (which was already neutropenic, IgG2 and IgA deficient) I found I could cope with higher levels of salicylate in foods. Without any retesting I decided I had overcome my salicylate allergy and two months later, by May my arthritis was pretty challenging but I paid it little mind, after all, I was 47. I was still only moderate in terms of the levels of salicylate in my diet. The following month I noticed a fast growing lump in my breast and was diagnosed with breast cancer.

I struggled to get veins for the IV and read that honey might raise them. Honey was an immune booster and high in antioxidants. It was also 18 times the high level of salicylates. But in my mind I decided 20 years of being low salicylate may have contributed to me getting breast cancer… after all, the high salicylate foods are the richest in antioxidants so I’d been off those for 20 years. I determined to make up for that and added stone fruits and berries back into my diet.

I made it through chemo with an immune and autoimmune system that was behaving very badly and dysautonomia. Neulasta came to the rescue, giving me enough white cells to finish chemo, antibiotics filled the gap, steroids reduced the level of autoimmune chaos, thrush dropped by throughout to laugh at my struggles and we tried to babysit the dysautonomia. The arthritis would back off in week 1 of each chemo cycle, but be back with a vengeance by week 3. On reflection this was probably because I was on liquid and soft foods for the first week and by default had probably reduced the salicylates that week.

Chemo ended after 12 weeks and I was onto Tomoxifen to keep any stray estrogen receptive cancer cells safely starved. My friend came over and we did an extraction of honey from our hives (yes, salicylate intolerant person keeping bees!) and I had so much honey I could have it daily. Bruises appeared out of nowhere, the worst of them a 12 cm! Capillaries in my feet were breaking, my joints were so bad at night I struggled to make a fist or walk for the first 10 steps. Next came hives and a mouth full of mouth ulcers. The sciatica I’d had since my teens came back. It was getting harder and more painful to walk. Finally I saw the GP and after not taking painkillers for back pain for 31 years I caved in and accepted NSAIDS and valium as a muscle relaxant.

Then came the pain storm. I’d had sciatica so horrid it made me depressed and cry but it had never caused paralysis. The stabbing pains and traveling dull aches suddenly hit in succession around my torso from my waist to my knees, circling me in what felt like a series of severely painful electric shocks. I made it to the bed and laid there shocked.

When I tried to roll over, get up, stand or walk, my lumbar and thigh muscles were ‘disconnected’. I could crouch but not get up though could walk my hands up my legs, pushing the knees, then thighs back into standing position and locking them there then climb my hands up the wall to straight out my lumbar spine in the absence of lumbar muscles to help me. I could shuffle but was virtually unable to raise my knees. I couldn’t get up stairs without using my hand to pull each leg up onto each step. These muscles had simply stopped talking to my brain. I wasn’t a paraplegic. The legs were working from the knees down and I still had bladder and bowel control.

I had severe back pain but now only the old sciatica I’d lived with since my teens. Slowly over the next two days the right thigh muscle began to reconnect, the day after that the left thigh muscle began to reconnect and then slowly the lumbar muscles began intermittently to work again. By day 4 I was able to get about with a cane to get me in and out of the car, up and down from seats and stop me falling when the muscles gave way again.

A trip back to the GP and he was concerned about the left leg. Asked to raise it the thigh struggled to respond. The muscle was far weaker than that of the right leg. He wrote a referral for an MRI with the queries: bone metastases? Transverse Myelitis?

Obviously, just out of chemo for breast cancer this was terrifying. Got the MRI and went to the GP for the results. We were so excited there was no sign of cancer nor TM or any MS related autoimmune myelin disorder. What there was was a degenerated spine with a plethora of anomalies to it.

The ligaments (Ligamentum Flavum and Posterior Element) that surrounds the nerves of the spinal cord had hypertrophy, meaning these had scar tissue that causes thickening and in my case this was constricting the space for nerves in the spinal cord and through the side recesses, essentially compressing the nerves. This hypertrophy is apparently associated with inflammation over the years so struggling with allergies and immune deficiency would not have helped. There was some minor arthritis damage to the parts that keep the vertebrae stable and two herniated disks with Schmorl’s Nodes protruding up into the vertebrae and out into the spinal cord, contacting more nerves there too. Together these things created different places of narrowing of the spinal cord – what is called spinal stenosis. By all accounts my spine showed enough reasons for sciatica and chronic back pain and enough contact and compression of nerves to account for some degree of intermittent loss of muscle function. The severe pain storm was most likely a reherniation of an already herniated disk spilling its jelly like but highly irritant contents out onto the nerves.

The GP was concerned about my left leg and told my husband that if it got any worse to call 000 and get straight to the hospital. I thought he was being melodramatic. He explained that if the nerved to that leg get too compressed they can be damaged and I can permanently lose the use of that leg and become wheelchair bound if they can’t save the leg through immediate back surgery to relieve the pressure on the nerves. I was referred to a neurosurgeon to discuss back surgery.

I went to a physiotherapist who was wonderful. She showed me how to manage my pain and stop it spiraling out of control. She encouraged me to use whatever was still working in order to keep getting the muscles to come out of spasm and reconnect.

But there was something perplexing. The level of pain and disability was obvious enough and to a degree it fitted the MRI scans, but from the scans the issue didn’t appear to be as urgent as the actual presentation.

I remembered my salicylate intolerance, how it caused me swelling in my joints, hands, feet and inflamed my veins. Could all the honey have caused such acute levels of inflammation that it dramatically exacerbated inflammation in the spine and contributed to such swelling that it caused more serious nerve compression than the scan itself already showed?

Three days of being low salicylate and I walked into the GPs office significantly improved. The pain had gone from 6-8 out of 10, 80-90% of my day to just 2-4 out of 10 around 15% of my day. We all breathed a sigh of relief.

The osteopath and chiropractor each explained to me how inflammation in soft tissue wouldn’t show on the MRI so that when swelling of soft tissue filled up the remaining space around the nerves they’d have been more compressed than showed in the scans. Mystery solved. Even talking to the neurosurgeon on the phone (telling him why I didn’t feel I needed to come and see him now) seemed to understand this.

I’d never have imagined that salicylate intolerance could have resulted in enough pressure around an already compromised spine to reherniate already damaged discs, triggering a storm of acute sciatica enough to cause paralysis of all the trunk muscles via the process of pain inhibition nor that that swelling in a spine already having contact and some compression of the nerves could push that to a point that I could have ended up having immediate back surgery to keep me out of a wheelchair.

When we imagine food intolerances are all about hives or a bit of joint stiffness, we have no idea what other vulnerabilities these may be pushing in already compromised body parts.

And now I know more about my back than I ever knew. I understand the journey that probably began with Ricketsthen immune and autoimmune disorders and the supplements in late childhood that had me grow from 3ft 3″ at age 9 to 5ft 1″ at age 12 and how these things made my back what it is, and isn’t. I understand that my trampolining days are over, gardening limited, that I must never just from a table or chair for the rest of my life if I value my mobility. I understand that long haul flights are likely never going to work for this spine unless I fancy running the gauntlet again with potential back surgery.

Am I upset? Are you kidding? I can walk again, go for walks, even dance enough to make myself laugh. It wasn’t cancer, it wasn’t TM or MS, I’m not in a wheelchair yet and if I’m lucky won’t be or at least have a surgery option if it comes to that. Change is of course hard, and I’m only 48 years old. I still think I’m lucky.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

A mysterious case of Salicylate toxicity and spinal stenosis

PERSONAL EXPERIENCE, PROFESSIONAL EXPERIENCE, AND QUALIFICATIONS

I was two years old in 1965. It was a time when autism was deemed ‘childhood psychosis’. After three days observation at St Elmo’s Private Hospital, I was diagnosed as ‘psychotic’. I was diagnosed with language processing disorder in late childhood around 1972 then later diagnosed with the tidier label of autism in 1990 by Australia’s most eminent autism experts, Dr Lawrie Bartak.

In the same year I built on my existing post graduate degree in sociology and degree in linguistics and did a Dip Ed, becoming a qualified teacher whilst progressively going on to author 9 published books in the field of autism, become an international public speaker since 1994, and an autism consultant since 1996. My text books are used in courses on special education & psychology. I have been hired by health services, human services and education departments to work with people in their care and provide training.

WHAT I DO

My job as a consultant is perhaps closest to being a ‘specialised case manager’ for hire. I assess ‘developmental fruit salads’ and I have worked with over a thousand families. I look at a person’s current communication, interaction, behavior, development. I then look at which low or no cost strategies might help that person lead a fuller life, better reach their potential and establish more harmonious relationships with those in their life.

QUALIFICATIONS AND RESEARCH INTERESTS

My qualifications are in linguistics, sociology (largely social psychology, social anthropology), teaching and I have wide experience in research, counseling, and advocacy. As such, I draw upon a wide range of research interests: gut, immune, metabolic issues, any co-occurring mental health issues, personality/identity/dissociative disorders, sensory perceptual and sensory processing disorders, motor planning issues, environments and their patterning.

THE AUTISM SPECTRUM:

There is ‘Autism’ the noun, the diagnosable condition. There is also ‘autistic‘ the describer, the adjective and any human being will have experienced some kinds of ‘autistic’ phases or moments. Today, Autism is still a singular word given of a range of conditions in a spectrum of ‘developmental disorders’ (some prefer to see them as ‘developmental differences’). However, given the diversity of people on the autism spectrum, these are actually AutismS. Looking closely at each individual, these can broken down into addressable ‘autism fruit salads’.

I have seen stereotypes busted. I have seen profoundly disabled human beings inspired to be more than their condition. I have seen the miracles of what those once written off can teach us. I have also seen the miracles of those without autism who dared to learn so much from those with it.

THE SPECTRUM OF DISSOCIATIVE DISORDERS:

Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons. Dissociation, Derealisation (the feeling nothing is ‘real’ or that everything feels like a dream), and Depersonalisation (cutting off from emotions, detaching, inability to take experiences personally), are experiences most of us have had. Dissociative disorders are where these create problems with functioning and coping in every day life. Some people will have greater tendency toward developing dissociative disorders and if they then experience significant trauma may be more at risk of Post Traumatic Stress Disorder (PTSD). If they are continually entrapped with such experiences from infancy or very early childhood they may be at risk of more severe dissociative disorders such as DDNos or DID.

In 2010 I was diagnosed with the dissociative disorder, DID, a condition I’ve probably had since I was 2 years old and which was enhanced by my dissociative abilities already present as part of my autism. I connected with a number of adults both on and off the autism spectrum who were also diagnosed with DID and eventually used my skills as an autism consultant to begin to research the complexities and diversity of dissociative disorders. I came to do some consulting work associated with DID, primarily working with therapists in helping them as they came to grips with the DID systems of their clients.

ONLINE CONSULTATIONS:

A ‘Big Picture’ Approach

I go past labels and symptoms to the ingredients, the foundations, and what that means for the systems at work, the experiences of the person and their own natural motivations and distresses. Because all people are unique, I don’t do quick one-size-fits-all advice. In a consultation I set to work to focus carefully and professionally on helping each person with their particular issues.

Who can use the service?

Any person wishing to gain more insight into their particular ‘developmental fruit salad‘.
Those with developmental disabilities and their families
Couples where one or both partners are on the spectrum.
Those with or without formal diagnosis on the spectrum who feel affected by related issues.
Those whose primary communication is typing.
Those working with people with developmental disabilities or DID.
Those studying developmental disabilities or DID.

(for professionals I can supply a tax invoice stating services as professional development).

How online consultations work

Payment for email consultations is by credit card via PayPal and cost $50 AUD per hour spent answering.
When you pay for a consultation I receive notification of your payment which includes your email address.
When I receive notification of your payment I will then contact you so we can start.
I never exceed one hour in any one consultation without asking if you want to continue.
I keep track of the time you’ve spent so you can use your hour all in one go or spread it out over time using it as a ‘drop in troubleshooting service’ for future issues you’d like quick tips for.

Email Consultations

You send your information and questions (I do not charge for time spent reading, only answering).
You can also send photos and short video clips.
I try to thoroughly address as much as I can in our hour.
You will usually get your replies within 48 hours.
When I reply I will insert my responses into the text of the email you had sent me. This way you get back your original email but now have my responses inserted throughout to refer back to.
If you want me to delete what you’ve sent, I can do that and simply send my own replies.

In your consultation email you should explain:

The context of who your consultation is about
The nature and history of the issues and what things you want help with
What questions you have or what things you need instructions, feedback or opinion on.

If my replies only take me 15 or 30 mins the rest of the paid hour will remain in credit for a future email consultation. I will only reply within the 60 minutes of my paid reply time and will then insert a line explaining our paid time has run out at that point. When you’ve used up the hour’s time you’ve paid for you are free to book another hour’s time if you need or want to. There is no obligation to do so.

Skype Consultations

Skype is a means of doing online audio-video meet ups or typed chat in ‘real time’. This means we could see and hear each other directly and I can visually demonstrate techniques to you. If you have Skype on a laptop you can even walk the laptop into the room your child is in. You can also bring others into the room to sit in on the Skype consultation as a question-answer forum for other family members or professionals involved.
You can download Skype for free here:

http://www.skype.com/

Skype consultations are done in ‘real time’ so we would have to match up our time zones and make an appointment to meet on Skype. I’m in Melbourne, Australia. You could check time zone match ups using the ‘Meeting Planner’ tool here:

http://www.worldtimeserver.com/meeting-planner.aspx

Try and pick a match up time during reasonable business hours (between 9am- 5pm) here in Melbourne if possible.

When you have found a reasonable meet up time email me at bookings(at)donnawilliams.net
I’ll find us an appointment time to meet up on Skype and swap Skype addresses.
You can then feel free to then book and pay for your hour.

When we meet up on Skype be ready to explain:

The context of who your consultation is about
The nature and history of the issues and what things you want help with
What questions you have or what things you need instructions, feedback or opinion on.

If replies may only take me 15 or 30 mins the rest of the hour you paid for will remain in credit for a future Skype consultation. When the 60 minutes of my paid reply time is up I will let you know. You are then free to arrange a future Skype meet up appointment and pay for another hour’s time if you need or want to. There is no obligation to do so. Skype consultations cost $60 AUD per hour spent answering.

Wondering about the exchange rate from AUD to your own currency?
PayPal will do the conversion for you, but to get an idea of what this could be in your own currency using www.xe.com/ucc/

WORK STYLES

What work styles do I use?

Troubleshooting

You tell me the problem, I advise you/train you in the related strategies.
Mapping out ‘Fruit Salads’

This is for those who want more than a hit and miss ‘one size fits all approach’ but also to help them better work out which programs and services may best fit them or the person in their care. What presents as one condition is often actually made up of a range of separate conditions which combine to give the misleading impression of being ‘one thing’. I help people extensively explore those things and include resources to further research and the management strategies that can be used for each piece of ‘fruit salad’. These extensive ‘reviews’ may explore:

information processing
personality, identity and motivation/distress patterns
mental/emotional/physical health issues
advocacy/inclusion issues
social/occupational/life skills or goals and the maps with which to reach them

An Indirectly Confrontational Approach

I am the author of Exposure Anxiety; The Invisible Cage, a book outlining an Indirectly Confrontational Approach. An Indirectly Confrontational Approach may help reduce:

Compulsive avoidance, diversion and retaliation responses of Exposure Anxiety
Social phobia
Social-emotional complications of severe face blindness
Selective Mutism
Learned helplessness
Social and communication challenges in those with Reactive Attachment Disorder
Oppositional Defiance Disorder and Pathological Demand Avoidance
Turn down the volume on some forms of Personality Disorder (Schizoid, Schizotypal, Dependent, Avoidant, Passive-Aggressive personality disorders)

Gestural Signing training

Gestural signing is generally called ‘home sign’ and one part of deaf signing. It is a way of using movement to track the meaning of both written and spoken speech (one’s own and that of others). It is not Makaton, not ‘waving your hands about’. Gestural signing may be most useful for those with:

‘Meaning deafness‘ (Verbal Agnosias/Semantic-Pragmatic Disorder)
‘Meaning blindness‘ (Visual agnosias)
Difficulty gaining or holding meaning when reading (Visual Verbal Agnosia)
Severe difficulty with the brain-speech relationship (Oral Dyspraxia/Speech Apraxia or Speech Aphasia )
Severe difficulty daring to speak (Selective Mutism)

Kinesthetic Learning

Kinesthetic learning is about using touch, texture, acoustics (sounds), to explore the progression and connections between the parts of objects or their wider context. Kinesthetic learning is hands on learning for those who can’t think then do and much learn through doing. It is especially important for meaning deaf/meaning blind children who struggle to learn just from visuals or watching. This can help those with:

Object blindness (who see the part, lose the whole)
Context blindness (inability to use context to understand objects or actions or meaning of objects)
Severe face blindness to recognise and connect with others

External Mentalising

Some people struggle to follow instructions, make mental comparisons, conclusions or choices. This can be because they struggle to keep track of or consciously juggle complex thoughts. External mentalising involves using representational objects and ‘mapping’ to keep track of multiple concepts, to build up insight and self awareness, to understand cause and effect/consequences. Gestural signing is also one of the tools used for external mentalising. External mentalising may help people to:

Measure and assess which feelings and relative strengths of feelings someone may be having
Track a simultaneous sense of self and other they might otherwise never process
Keep track of the meaning and sequencing of their own speech

Discovery Learning

Discovery learning is the opportunity to directly explore the wider community, public transport, encounter others, exchange money, handle objects and generally get access to real life experiences. Discovery learning allows a person to kinesthetically (hand over hand) explore a world they may not have the communication to ask about or the experience to yet visually understand.

It is also process in which tantrums and meltdowns are managed in a neutral way, without judgement and the person is navigated through self calming processes in learning emotional self regulation. The guide negotiates and advocates directly with those in the community in the discovery learning process. Family members are encouraged to be present and take an active part in training to take over as the guide. Discovery learning may:

Turn around learned helpless
Build confidence
Directly educate the community about it’s own role in the lives of those with disabilities

Counseling

I counsel older children, teens and adults including:

Any person wishing to gain more insight into their particular ‘developmental fruit salad’.
Those with developmental disabilities (including autism, Asperger’s, PDD Nos etc) and their families.
Couples where one or both partners are on the spectrum.
Those with or without formal diagnosis on the spectrum who feel affected by related issues.
Those whose primary communication is typing.
Those working with people with developmental disabilities or DID.
Those studying developmental disabilities or DID.

Case Management

I help families work out which interventions are most relevant and useful at a given time based on the family’s unique structure. Where possible I may also suggest, demonstrate or train the family in alternative approaches which are ultimately low or no cost. This is because:

No interventions work for all people with a shared label.
Some interventions bring out the worst in a personality yet this may be blamed on ‘the autism’.
Some interventions do not train or empower the carers or the person with the disability.
Some health interventions are assigned to those with disabilities who do not have health issues.
Some products are targeted at those with sensory perceptual or cognitive differences these products don’t fit.
Financial burden can be put on families to adhere to approaches and products which may not be required long term, may have outgrown their usefulness, simply don’t best suit their child or greatly disturb the sense of home or family life

How do you book an online consultation?

You go to this page:

http://www.donnawilliams.net/emailconsult.0.html

then pay for a consultation and I’ll get the notification of that payment and we take it from there.

What did other people think of my consultation service?

here’s some testimonials:

I have been privileged to work with Donna for the past 6 years as she carried out regular consultancy work at the unit I managed in Staffordshire, UK for children with autism. She was a brilliant influence on staff, parents and pupils alike. Donna has a great gift for very quickly identifying pupil’s difficulties and needs then offering practical advice to help. She is always organised and professional in her work and reports and information arrived when she said they would and were extremely detailed and valuable. I have no hesitation in recommending her services.
J.A. Birchall, B.Ed, MA (Teacher in charge of Autism Outreach Team)

In less than two hours of consultation with Donna, problems we had been suffering for years had answers. Within two weeks my 5 year old daughter no longer needs to be locked in her room at night. She is feeding herself and she has given up baby bottles. She goes to the toilet. How fortunate we are to have the privilege of gaining Donna’s direct insight. How long would we have stumbled around in the dark? Weeks? Months? Years? Forever? Donna has given us a gift of understanding and hope. She is a “Living Legend”.
Lis Eynon, Tauranga, New Zealand.

It has been a privilege to know Donna Williams who has authored 9 books on Autism, some of which are international best sellers. Her knowledge of Autism is first hand and comes from personally experiencing it. It is not learnt by studying the subject or merely by observing those with Autism. With her long history of contact and dealings with many many Autistics, her expertise on Autism should be respected. Having read over 150 book on Autism, I personally listen to Donna Williams when she speaks and actually take note of what she says.

On a professional, as well as a personal level Donna is inspirational and her expert advice is invaluable and is virtually impossible to obtain such high quality and practical advice about Autism anywhere in Australia. I can say this confidently, as I had been seeking, to no avail, such advice for a long time until, by chance I came across this amazing “Artie Autie“.
Dr Tony Marshal, MB, BS, MHP(NSW), FRACGP
Family Physician, Frankston, Victoria, Australia

Donna has a very impressive ability to recognise and focus in on the particular difficulties being experienced by individuals across the spectrum of autism conditions. Having identified the issues, she explains them to the individual and his/her carer in a way appropriate to each person’s level of comprehension and way of communicating, recommending strategies to overcome the presenting issues. Her written reports are thorough, very helpful and arrive when she says they will. She has very high ethical standards and is a professional I would have no hesitation in recommending to those needing an expert in autism.
Kathryn Erangey, Autism Oxford

I remember when my son was first diagnosed at around two and a half and I was told he needed speech therapy, playgroup and early intervention and was given a booklet on all the resources available to me to help and sent on my way. Well it was a maze to say the least. I got on the net and found so much information, I didn’t know where to begin and what was relevant. Over the next four years, I undertook a lot of research, but nothing gave me what one day with Donna Williams did. She is not a social worker, not a psychologist, not a dietician, GP, naturopath, homeopath, neurologist, immunologist, etc, etc, etc.

Donna provided me with a perspective, understanding and the most valuable information on issues associated with Autism, that you would get from all of the people I just mentioned in one place. Moreover, she provided a perspective from more than one side of autism. Thorough, clear, precise, and dedicated, I felt that she was reading my mind and answering questions before I even asked them. Her assessments were mind-blowing and accurate and her report was clear, easy to follow and full of ideas and strategies to work with the issues that exist in my family. A warm, interesting, beautiful soul, Donna Williams was a catalyst to a new phase in my family’s life and a step forward in understanding the world of autism and related issues. Thank you so much Donna.
Anastasia Maragakis, Australia

As a mentor and a good friend Donna has given me the determination to carry on. Her lectures, website and emails give me the extra knowledge to sort out my ‘fruit salad’ making the world a less intimidating place to live in. More people should listen to Donna who helps to remove the barriers to learning and help make bridges between us.
Zoe, UK

For the better part of three years now, Donna Williams has counselled and aided me through anxiety and self-destructive behaviours, including self-harm and social isolation. She reached me through a range of ways, beginning as a brief couple of words from outside my bedroom door (where I had mostly been for a year and a half) as I didn’t want to meet anyone. That progressed on to art therapy, and it wasn’t long before Donna taught me how to become social in a safe and supportive environment.

Donna Williams was able to connect with me through her books, art, music and face-to-face counseling, even though I am not diagnosed on the Autistic Spectrum. She was able to do what none of my other counselors; psychiatrist and psychologists were able to do; give me a sense of self. I’m now back at school and on my way towards working in the field of Social Work.
K.Toni, 18, Australia

Consulting with Donna made an enormous difference in both my daughter’s life and my own. I was so frustrated after trying the recommended therapies and programs of the day which promised to help children with autism regain their ability to cope, learn and communicate only to find my daughter slipping further and further away. Donna taught me to be patient and respectful, to allow my daughter the space to approach me when she was ready for input rather then force-feeding her drills and stimulation from morning to night. She taught me about my daughter’s Exposure Anxiety; about her need for time alone and gentle, indirect approaches rather than the demanding and highly stimulating methods we’d been using. My daughter responded immediately and joyfully to the approach I learned from Donna and for this I will be forever grateful!
Lisa Edmond, Temecula, California, U.S.A.

Deal provides services for children and adults with little or no functional speech, and we regularly refer clients with difficult behaviors to Donna. She consults with the families of people with ASD, providing valuable insights into many behavioral issues, and generates detailed and professional reports. Our clients have been very appreciative of her services.
Rosemary Crossley, A.M., M.Ed., Ph.D.

Donna’s willingness and ability to help us with our son, Gordy, has been a Godsend. Her insight into how he experiences the world has provided a window for us to better understand and support him. Donna has answered questions for us that no one else ever dared. A time when we thought we had heard it all, read it all, known it all, Donna lead us to invaluable new resources, remedies and strategies to address our son’s medical, emotional, psychological, sensory and behavioral issues. Although we live on opposite sides of the world from each other, Donna’s compassion has been an invaluable source of support. Knowing that ‘an answer’ from Donna would be there on our computer in the morning, has gotten us through many a dark night. Her vigilance and optimism are an inspiration. And for all her experience and incomparable expertise in the field, her rate for email consultation is the best bargain on the entire planet.
Gordy’s Grateful Mom

The minute we saw you, you changed our lives for ever for our son George. We have taken your advice to the tee. As a result this boy has changed immensely. He now knows his alphabet, his numbers up to 20 all his body parts, also spells 7 words, his toilet training is excellent now, his speech is excellent in sentences and he is voicing what he wants. We are on the journey, and what a challenging journey it is! We do get bad days but nothing like before. Thanks again.
Mary Alam, Australia

I have struggled to exist since I was little, since I can remember. I’m now 38 and I’ve had several therapists, some National Health Service people, some private and I had all but given up hope that someone would reach who I really am and how I function. My depression and my OCD were diagnosed no problem, but this became a diagnostic blanket which covered my real problems. Whilst browsing the web I found Donnas site and followed up several other sites on autism, a rather large old rusty penny crashed into place. I wrote to Donna for a consultation with massive fears about confidentiality but Donna was professional, friendly and knew her grounds inside and out.

Donna is patient, warm, funny, and intelligent. Her insight and understanding have given me the ability to fight back and finally understand who, why and what I am, how I function or dysfunction in a world of people that feel alien to me. Her advice, explanations and kindness have been well wrapped in total professionalism. In my own opinion, Donna remains the world authority in understanding and helping all those across the autistic spectrum. I only wish I had met her years ago.

Donna is an inspiration and the way forward for autistic/asperger/autistic spectrum/high functioning adults and children alike and I wish her every success with all those out there who desperately need an explanation, diagnostic teacher and friend.
…DR

The help that I and my 14 year old eccentric, autistic son have received from Donna via her email consultancy has been of outstanding value. She stood by me and guided me through crisis like when my son started and consequently stopped self harming. She has always inspired me and come up with answers I would have never known or thought about but which worked – be it about health issues, problems at school, problems at home , or about my own personal struggles with life. She has challenged me when my attitude stood in the way of our progress. Knowing that she is there behind the screen has been such a support. I find her approach unique, dedicated, caring and uplifting. I feel privileged to have received Donna’s services. My son’s life and my own life are infinitely better for it.
Malai Sontheimer, single parent, counselor and acupuncturist, Bristol England

Our son Archie is 7, non-verbal, and severely autistic. He’s funny, affectionate and loves to tease us. He also has many obsessive compulsive behaviours. In our initial consultation with Donna I asked how to deal with these compulsions and obsessions. At that time our calendar had been stuck on January for 7 months (attempts to take it down or turn over the page were met with meltdowns), and I was not allowed to open any windows in the house (again opening a window resulted in a meltdown). Within a couple of days of our first consultation the calendar had been taken off the wall, and 3 windows in the house were open, all achieved with little complaint from Archie.

We’re now working with Donna to better understand how Archie perceives the world and how we might use this knowledge to increase his ability to communicate. Donna has such an insight into Archie’s world and is able to pass this onto us, thus providing us with the tools and confidence we need to help him. Her emails are considered, thoughtful, extremely informative and an absolute bargain. My only regret is that we didn’t start sooner.
Archie’s Mum, UK.

Donna demonstrated an almost clairvoyant ability to get under the skin and inside the mind of my daughter. But anyone who has read Donna’s books will know that this uncanny ability is founded on long hard personal struggle and extensive research in which she pursues all avenues without prejudice. This is, quite possibly, an unrivaled combination within the world of autism and in her consultations Donna shares the fruits of this with great generosity of spirit. I can only recommend to other parents (and professionals) to take advantage of this very reasonably priced service. Over the years my daughter has seen any number of professionals, but even when helpful, none have shown this depth of compassionate understanding of the autistic mind.

Not every parent will have the energy or resources to pursue all the options that Donna offers, so be prepared to select what feels right and possible at the time.
David Clark

I was invited to one of Donna’s workshops by a mother who also has an autistic daughter. Donna quoted “Regarding the present view of Autism, we are the idiots of tomorrow.” Listening to her seminar changed everything. I instantly arranged a private consultation. Donna was the first person who actually told me why Lena behaved the way she did. Donna taught me how an holistic approach could help my daughter and how just by changing my teaching methods Lena could have great improvement. I began to see incredible changes in Lena, and for the first time since Lena had been diagnosed I felt hope. Under Donna’s guidance I have been able to help my child communicate with me. I am my daughter’s guide in her life. Lena has really been my teacher. And if it wasn’t for Donna I may have not seen or understood it.
Maria Kromidellis

Donna Williams, BA Hons, Dip Ed.
Author, Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Affordable online help for people with autism & associated conditions

We hear from women about their abusive mothers; the emotional incest, the mental-emotional abuse, the physical violence and society can get to grips with that, the daughter herself may walk away able to view herself as a ‘survivor’ from that. And we know that sexual abuse is perpetrated by the same parents who have already been capable of other abuses of their children and the lack of boundaries that underpins that. But we hear far less of those women sexually abused by their mothers. Those who were usually won’t speak of ‘that part of things’, if they are not too dissociated from ‘those experiences’ to even be able to face what happened. There is simply something too bizarre about it, unmentionable, alien for both the person who went through it and the society they never told about it.

How could the person who gave birth to you be so disturbed as to see you as a toy, their object, possession, some kind of extension of themselves on which to play out their sexual disturbance, their jealousy of other females, their lust for power over another female, their indulgence in a secrecy and taboo they are certain nobody would ever believe and no daughter would dare to tell?

However much they may have learned to masterfully feign the role, these are not people who are actually capable of healthy love between themselves and their child. Sometimes it will be a mother who is mentally ill, has personality disorders or is psychopathic, substance abusing or otherwise addicted or any combination thereof. Sometimes it will be a mother who has different fixations and perversions about her daughters than she does her sons or even abuses one of her children whilst not abusing the others at all or in the same way. Sometimes the mother who has sexually abused her own children will then continue the abuse on some level with her grandchildren to the extent she can get away with it.

With her own child a mother usually has a high level of private access. If the child is a baby, under 3 years old or has communication or developmental disabilities, the abusing mother may blame the child’s distress or disturbance on being misbehaved, spoilt, or on their disabilities. Children with functional communication are more likely to come to the attention of care services after the abuse has come out through speech, play or artwork.

Mothers who restrain, intoxicate or violently sexually abuse their pre-verbal daughters (or allow or facilitate others to do this for her by proxy) may not bother with the grooming stage at all. When the same abuser then has grandchildren they may have less exclusive or private access to the child so may be more likely to groom the child before overtly sexually abusing them. She may repeatedly expose them to comments, actions or material that desensitizes them to blurred boundaries, dares them to higher levels of tolerance of abusive behaviour, challenges their ability to remain silent in a pact with the abuser. If the child doesn’t disclose, the abuser may take this to another level and if they do disclose may cover their tracks, blame the child, threaten the child or move on to an easier victim.

The mothers who sexually abuse their daughters do so directly and indirectly. At its most subtle level these are the mothers indulging in the oversexualisation of their child, exposing them to porn and graphic language and suggestions. It can be a mother who sexually abuses their daughter in complete secrecy. It can be a mother who endangers their daughter, allowing others to abuse her, even facilitating this or actively suggesting their opportunity to do so. The mothers who do this may do so

* for the power over another human being,
* out of harbored resentment against an unwanted child for being born,
* for financial gain to pay for compulsive gambling, alcohol or other substance addictions,
* to observe replays of their own abuse as a child,
* out of jealousy of other females projected onto the child they wish to see harmed,
* out of hatred for the child’s father (damaging ‘his’ child),
* to win attention/approval from a male pedophile they are with,
* to push their own levels of detachment from empathy or compassion they feel weakens them (to prove/reinforce their toughness),
* as part of identifying with female psychopaths who have also abused children,
* as part of the mother’s unmanaged personality disorders
* because she can and can get away with it

… the motivations are diverse.

Daughters sexually abused by their mothers are among the least likely victims to report the abuse. It’s time to acknowledge that women also sexually abuse children, that mothers do, that this may be their sons or their daughters, that this may happen when the child is a baby, a toddler, or at any time throughout childhood. And just like male perpetrators, they will go to great lengths to hide what they have done. A man cannot so easily hide behind the word ‘love’. But a mother who abuses can use it as a powerful deflection, a hiding place, a means of silencing the child she abused as if to say “if I proclaim ‘I love you‘ often enough, loudly enough, public enough, even co-opting siblings into the chant, then I can feel safer that nobody would ever believe I had been capable of that“.

Can such mothers feign the role of being a loving mother? Come on, … can psychopaths and narcissists con people? Can those with Borderline Personality Disorder play roles that have no relationship to the person underneath? Of course. It’s time we looked past the powerful blinder of the term ‘mother’ we associate with Mother’s Day cards, hearts, roses, aprons, cookies, dolls and dancing lessons. Mothers who sexually abuse their daughters are human beings, disturbed and disturbing, and their title of ‘mother’ is no more than a mask.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Mothers who sexually abuse their daughters

UPDATE: results back today from the pathology lab… it was not a melanoma… it was a blue nevus (a blue mole)… apparently it had mutated from a normal mole, hence being largely black blue but also with red and why it looked like a melanoma. probably arrived as a result of drug related damage to the skin…. but its gone and all’s fab with the world

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

I should be so lucky – my cancers are so polite!

The risk ratio that we all hear about — that one in eight women get breast cancer — is for women over 90 years of age. The rate for women in their 50’s is more like one in 50.

According to cancer.gov
A woman’s chance of being diagnosed with breast cancer is:

from age 30 through age 39 . . . . . . 0.43 percent (often expressed as “1 in 233″)
from age 40 through age 49 . . . . . . 1.45 percent (often expressed as “1 in 69″)
from age 50 through age 59 . . . . . . 2.38 percent (often expressed as “1 in 42″)
from age 60 through age 69 . . . . . . 3.45 percent (often expressed as “1 in 29″)

So, statistically, at age 47 when dx’d with it, I had only a 1 in 70 chance of developing breast cancer.

Even after tumor removal I would still have a 50% chance of the start up cells returning to the original breast (my breast cancer was rare, only 5% of breast cancers start with comedocarcinomas, the rest are slow growing, low return rate, only 30% malignancy rate… comedocarcinomas are fast, high return rate and 100% malignancy rate).
ANSWER: 1st mastectomy

then based on a 20 factor analysis of my particular tumor, I had a 1 in 4 chance of stray cells spreading, causing secondaries and killing me in the next 10 yrs.
ANSWER: chemo

then chemo would reduce that chance to 1 in 10 chance of stray cells spreading, causing secondaries and killing me in the next 10 yrs.
ANSWER: chemo then 5 yrs of tomoxifen (my tumor was ER+)

then I had a 13-38% chance of the start up cells starting in the remaining breast – ANSWER: 2nd mastectomy

And what did I get for Christmas?
ANSWER: Melanoma

what a f&^%$#* year.

But do I feel cursed? No. I feel blessed, its a great life, and cancer is my teacher, challenging me to greater and greater positivity, appreciation, clarity and boundaries. Cancer is also an arsehole, I hate it. What I like about Taoist is I can have both sets of feelings and feel not just sane, but saner for it.

And I feel lucky. My breast cancer waited until my husband was 2 weeks out of hospital, safe and ready to go back to work then able to also care for me. Then my melanoma waited 7 days until chemo was out of the way so it wouldn’t overwhelm me whilst already dealing with breast cancer. And my breast cancer chemo gave me a bald head on which I could easily see the melanoma in the mirror which arrived just before I would grow my hair back in the next three months, lose it amidst new black chemo curl and probably leave it under there as it grew, metastasized and ultimately killed me. So I have the most polite of cancers, they queue nicely, take turns and arrive at a time where they are best able to be found and attended to. Who could ask for more.

UPDATE: results back today from the pathology lab… it was not a melanoma… it was a blue nevus (a blue mole)… apparently it had mutated from a normal mole, hence being largely black blue but also with red and why it looked like a melanoma. probably arrived as a result of drug related damage to the skin…. but its gone and all’s fab with the world

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Statistically speaking – breast cancer and me

When my husband Chris got home, I showed it to him, obvious de’ja vu from late June when he’d been out of hospital 2 weeks and I had him feel the large lump in my left breast that within a week was diagnosed as breast cancer (3cm tumor that developed over 2-3mths). So he said he’d seen this black spot a week ago, thought perhaps I’d hit my head, had a blood spot there. He looked closer and determined it was time to see the GP tomorrow.

One of the GPs at our local clinic specialises in skin cancers and has all the equipment to view them properly. I saw him and explained I’d just finished chemo for breast cancer, had a history of variable immune deficiency (white cells, IgA, IgG2) and that members of my mother’s side of the family were in a medical study for Melanoma. He viewed it with the dermatoscope. It was irregular and black with a bluish tinge to it. He wrote a referral to a dermatologist and marked it urgent. I contacted one of the dermatologists on the list, one who’d seen me a year ago. His secretary put me in the priority queue then called to tell me I had an appointment on the Monday.

I had a million questions, of course. How could my chemo have killed stray breast cancer cells but let new melanoma cells develop? What did the speed of this new melanoma developing mean for the state of my immune system and its ability to limit the development of new cancers? Did I have any equipment at all to hold back new cancers? What happens when I get one I can’t see, even internal ones (you can develop internal melanomas). It’s one thing to potter through one’s life and get a melanoma and say, oh well, I’m an Aussie, it happens. It’s another thing to be in my 40s, 7 days out of chemo and find a fast growing melanoma appear out of nowhere as if its mocking chemo, mocking your new status as cancer survivor, your feeling you had beaten cancer and felt declared cancer free.

I named this new beast Mel Anoma. Like Ignatious Pug (my 3cm breast tumor) we will evict Mel ASAP. I refuse to let cancer boss me around. But I did want some answers… like did the chemo work? Am I missing something? Like Caspase2 (tumor suppressor protein that is responsible for regulated cell death of damaged cells, including cancer cells)…. without enough of it was the chemo less effective?

I heard from my oncologist. He reassured me that the melanoma in no way indicated the chemo failed to kill any breast cancer cells. He told me that my chemo drug, Taxotere, is not known to be highly effective against melanoma in the way it is against breast cancer and some other cancer cells.

One theory I have is that chemo caused immune suppression and as skin cancers are more common in people with immune suppression, this melanoma just took an opportunity provided by the chemo. I looked up the statistics for melanoma. Not nice! Now to just get that melanoma gone and recover from chemo to get my immune system into as good shape as possible.

UPDATE: results back today from the pathology lab… it was not a melanoma… it was a blue nevus (a blue mole)… apparently it had mutated from a normal mole, hence being largely black blue but also with red and why it looked like a melanoma. probably arrived as a result of drug related damage to the skin…. but its gone and all’s fab with the world

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Post chemo Melanoma

Maybe we see our own Pollyanna addiction to hope, our fear of fear, fear of despair, fear of depression or fear of helplessness. Maybe our own castration from the right or ability to judge or feel anger, sweeps us right up into our Pollyannaism. Maybe our pasts as the children of users and abusers honed these scars for us to the point of perfection, these marvelous scars of smiling never ending hope, optimism and Emperor’s New Clothes type ability to see what would be so much easier to see, or at least wouldn’t rock the boat. And don’t we all love a bumbling fool, an innocent child dancing under moonbeams and there’s the wolves of course not smiling, they’re baring their teeth thinking ‘dinner’,

So I had had a most wonderful day, a happy-non-birthday with fab people and I said to my hubby, we have always had lovely parties, only once did we really have an arsehole put a damper on one…. but then I clarified, no, he was not an arsehole, he was… well he probably had untreated Schizoaffective disorder, and addictions, and was a Sociopath and… well none of that was his fault…. and then I caught myself in my Pollyannaism and said… that’s how it happens, isn’t it… its the “But aside from all that….” syndrome. And I said, thing is that we could all do this with every seriously damaged using, leaky bucket, stalking, cling on, flag waving martyr, emotional vampire, bad boundaried, insatiable me-me-me, cause-addicted, self pitying, users and its true that they will have MOMENTS when ‘aside from all that…..’ But it IS just moments… And we Pollyannas don’t dedicate moments to these types, nope, we don’t give them a small piece of the big cake, we give them the whole damned cake, after all, Pollyanna lives on air half the time, or at least in the Glad Game she could convince herself that an air cake would do her if she’d given her own cake away.

So why don’t the Pollyannas just give away MOMENTS? Why do they throw years down the toilet on people who they should have only waved to at a bus stop and then caught another bus? Well Pollyanna is the first to become engaged. Want to know the time, ask Pollyanna. Want to be shown which way into town, Pollyanna will show you. Oh dear, you found yourself suddenly kicked out, well of course Pollyanna will give you a sofa in the living room. And will she ask herself why YOU didn’t improvise to solve your own problems, head them off, or do the adjustment work so you weren’t a walking need machine? Nope, for Pollyanna is a master of beingness and as such lives in the moment and doesn’t do the math.

So if she does learn to give away moments, would those be wonderful? Can a psychopath ice a cake? Well they tend to do well with icing and embellishment so, sure. And would Pollyanna imagine the cake might give her food poisoning? Nope, she lives in a world where a cake so nicely iced must be good under all that.

So it has taken me years to let the cynic rise up and have her voice and she and Pollyanna were so at odds. Progressively they understand each other and we are so much safer for it.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

But aside from all that….

AUTistic as an ADJECTIVE meaning (SELF oriented/contained) … brain fog and immune related brain issues can make one AUTistic…. social emotional agnosias or significant visual/verbal/body agnosias can make one AUTistic…. communication disorders can…. dissociative disorders can…. OCPD (Obsessive Compulsive Personality Disorder) is essentially an AUTistic personality disorder…. being Schizoid/Schizotypal are AUTistic personality disorders, having AvPD (Avoidant Personality Disorder) is essentially AUTistic, having DPD (Dependent Personality Disorder) is AUTistic and narcissistic, and NPD (Narcissistic personality disorder) and BPD (Borderline personality disorder), Passive Aggressive Personality Disorder, are essentially ME oriented personality disorders, drug/alcohol/computer/gambling addiction is AUTistic,… being hypervigilant to the point of social paranoid, or being too highly sensing or too real or too deep in a world of bullshit and ego can make one more AUTistic, being developmentally delayed or disabled in a world that co-opts that, pursues it, flagwaves it, uses it as currency, excludes or cashes in on that can make that person self contain, feel more AUTistic, so no wonder so much confusion/identification/debate about what IS versus what is EXPERIENCED as “AUTism”.

Having met personality disordered adults who with autism who were diagnosed in early childhood and having met personality disordered and dysfunctional adults who had no such childhood diagnosis, I know that without giving these people the ability to discuss their stuff they can too easily use the ‘autism’ idea to excuse it instead of address it.

So as we rip and shred and hate and harm and hurt and haul this person or that person over the coals of debate and diagnosis, maybe we should sociologically acknowledge the adjective of AUTistic so this vast range of people can discuss their alienation, derealisation, disorientation, and disabilities whilst acknowledging where and if and how they do or did fit a DSM for the medical condition of autism.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

AUTism… the adjective

CHEMO CYCLE 1/4
DAY ONE:
Day one on Mars, Thurs 1st Sept
Landing on Mars – first day of chemotherapy
All started great. Went along to the day ward with hubby Chris and pal Denise who provide a great humanizing atmosphere to this scary adventure. Started Chemo 12 noon, after lots of admission paper and debriefing.

I had drank around 1.5 liters from 8am-12 noon and walked from 9-10 and rugged up so all my blood vessels were warm and raised. I’d been doing stress balls and mini weights, ginkgo biloba, grape seed extract and honey, anything not to ever do the previous 7 collapses before final ultrasound guided vein navigation. So this time, veins were good through whole session.

SIDE EFFECTS & PROGRESS
no, I don’t usually get this detailed but wanted to give you folks some idea of the journey for me and Chris once Denise left around 3pm

1. developed nasal congestion 2pm,
2. developed chest constriction with increased severity constricting up to 30% lung capacity by around 2.30pm
3. slowly ate through small amount of combination rice noodles 3pm-4pm but found nothing was moving… hiccups, belching, the food seemed stuck in my chest.
4. further chest constriction relieved fully with nebuliser and Ventolin around 5pm
5. released home around 45 min later when congestion broke up
6. visual disturbance 6pm on way home 6.30-7pm
7. developed mild nausea, dizziness, hiccups, belching 6.30-7pm – took Motillium to allay nausea
8. acute muscle tightness in my legs 7pm – took magnesium to allay then prepared lemon balm tea as muscle relaxant to allay any related cramping seemed to work.
9. significant swelling in feet, calves, thighs, hands by 7-7.30pm – took dandelion coffee as diuretic to allay and put on Ted stockings.
10. tried to eat 4-6 spoons of tuna pasta, very slowly from 7pm-8pm,
11. hiccups, belching, very tight in top of gut but lungs still ok
12. rapid breathing, tremor, low temp (34C) increased difficulty with balance, mobility (waddling) re edema in thighs and groin in particular went to hospital.
13. eventually managed to pass 2-5 cups of urine between 8pm-3am – few, thought my legs would explode
14. Edema decreased – yay!
15. had 1 normal bowel movement finally, then fatigue set in and once safe enough fell asleep
16. woke 2.30 am with asthma (rattly, wheezy, … almost like my lungs were ‘frothy’, effervescing… scary! … but not constricted)
17. managed to eat a small can of apple sauce 2-3am – yay! , worked ok, added some acidophilus and balanced liquid vitamin-mineral as having eating much.
18. hydrating with lemon balm tea ok
19. pins/needles in hands, some edema in neck and arms so looked like a wrestler
20. went back on dandelion coffee for the edema
21. did some yoga to get circulation/swelling sorted, yes, at 3am.
22. we have a massage chair, that seemed to help.
23. 3am, first 1 normal full urination and next (stable) bowel movement, yay!
24. urination continued to be full around hourly, yay!

Went back to sleep next to my wonderful, tired, scared, asleep husband hoping I wouldn’t have a stroke or heart attack in my sleep. Sometimes you’ve just got to trust to life. I felt my body had some shock and was unstable but is stabilizing. The Dexymathasone (steroids) countered most of the side effects but wow, what a scary ride.

And Chris, well we had times we feared, times he just held me disoriented, my swollen legs up the hospital wall, my body in tremors a temp of 34.5C, rapid breathing. There were times last night this wonderful tired man stayed up as long as he could and I left him sleeping not knowing if I might be alive when he woke up or in what shape.

And next day… pretty much just like a mild hangover. The rocket may have had a rough landing on Mars but after that it began to be survivable. Once Chris did his work from home, we went walking at a reservoir with kangaroos, I slept on his lap as he watched TV, we baked bread, made banana custard, went walking and it was of course a wonderful day. That’s cancer for you.

And of course every chemo adventure and every cancer journey will be different. Some people will find it easy the whole way, some will find it really challenging, some will find it hills and valleys, some will find it a roller coaster. But whilst chemo may have side effects, but a 25% chance of secondaries killing me sounds like a bigger side effect than chemo will be.

DAY THREE
Day three on Mars, Sunday 4th Sept
Day two went fairly well in terms of Martian well being. We developed a rating scale of 0-10 where 0 was dead, 1-2 was so dangerous you needed to go to the hospital, 3-4 was ‘dodgy’ and aware you could end up sliding to 2, a score of 5-6 was a fairly usual day on Mars (in chemo) and a 7-8 was a great day on Mars, almost passable for life on earth. A 9-10 and nobody would even know you were going through chemo, and even you might momentarily forget.

So day 3 started seemingly ok, sure there’s rocks on Mars and seems some of them were well stuck in my digestive tract which was going nowhere since the early hours of Friday morning. Gravity works differently on Mars, hence things like edema blowing me up like an inflatable and a bowel which has forgotten what gravity is. But 8am we had an adventure. I noticed I was starting to fade, getting faint, pins and needles and numb lips. Took my temperature as Chris slept and realised it was 33.8C (normal is 36.5). Under 35 and you are heading toward hypothermia and should be worried by 34C. Coma sets in around 32C so we had some room to move. We did what we thought made sense, filled a bath with steaming water, put on an electric blanket, in I got. I asked Chris to check on the internet if we were doing the right thing. Apparently we were going exactly what we shouldn’t! Heating the external body too fast can suddenly pump cold blood straight to the heart and forget cancer, it would be the heart attack that killed me. So quickly out of the bath I got. No rubbing me down either, no electric blanket, just get me laid down, covers over me and raise my body temp slowly. Within an hour I was 35C and safe.

Around 6pm I was upside down on our massage chair, as seems standard on Mars when having edema, legs in the air, when a family friend and local restauranteur dropped by armed with food. To add to the surrealism, the food was from our USA friend, Bev and her family in LA, delivered here, to me, upside down in a massage chair 10,000 miles away and supported by my fab husband snuggling my feet up in the air. Soon another friend arrived, Zoe, and with Chris they used the toothpaste technique on my legs to try and squeeze the excess fluid back down toward my heart. Only on Mars do you hang out with your friends and family essentially standing on your head.

We decided that as I was getting like the Michelin Man and the bowel dept was on strike that this was scary so off to the after hours GP. Did enough laxatives to blast my way half way back to earth and by morning I felt like I had laid a nest of moon rocks. The rest of the day went rather well in Martian terms rating generally a 6 out of 10 but intermittent fatigue coming as standard now by 2pm and bed time by 7pm. That’s Mars for you.

So food is still by the cup full, walking around like a horse with colic trying to find remnants of what was once digestion, but other than a range of paroxysmal episodic intermittent but worrying shitola (a technical term on Mars), I’m doing reasonably in chemo terms.

DAY FIVE
Day five on Mars, Tuesday 6th Sept
1am: Chris learned the asthma 101. Out came the sprays, the nebuliser, the humidifier and tea tree, the Vick’s and into the massage chair I then went on the tapping program to try and get oxygen. Obviously Earth lungs clashed with Mars atmosphere.
Asleep after that, Chris was now probably ready to join St John’s Ambulance… he’d done lymphedema massage, hypothermia treatment, asthma recovery.

So we were really pleased when the next morning Chris woke to find I’d researched 2hrs of YouTube clips on lymphedema massage and now knew how to get my legs, stomach, arms unswollen before we faced it getting to a less reversible stage.

Essentially the legs can’t drain if lymph is blocked at the stomach and the stomach can’t drain if its blocked at the clavicle and the arms can’t drain if its blocked anywhere from the shoulders and neck to the clavicle. So the trick was to get the clavicle clear, get the stomach clear and given the lymph a chance to drain. Through lymphatic massage techniques and stomach related techniques off it was pumping all this waste of probable antibodies, dead and damaged cells, chemo drugs etc out to elimination.

But at 11.30 ish I started turning cold. I was wearing hat, coat, etc, and in a room with a 20+ temp, but there was no stopping my body turning itself icy. We took my temp but it was in Fahrenheit and we didn’t have the Celsius thermometer with us. Figured food would fix it so off we went for lunch at 1pm.
At 2pm something was wrong. Sure, I’d eaten, but inside my clothing my legs were really cold, toes, fingers like winter, my breathing getting faster, labored, I was fogging over, lips numb, fingers tingling and had started to get chills. Didn’t want to bother Chris and hoped to solve it. I just didn’t want any more hypothermia, he had been worried enough. So I tried to fix it myself, putting on leggings, another top, a warmer jumper. But I knew I was in trouble. I called as best I could and Chris came from the other room. He took my temp. It was 34.1C . We had another hypothermia episode on our hands. So off into bed I went, scarf, gloves, felt hat, well rugged, and sure enough, 30 min later I was at 35C, 30 more min and we were at 36C. We decided to go to the pharmacy and get another thermometer, one for the ear. Yep, same readings, the one under the tongue had been reliable. We thought I’d now be stable, but nope, the temp decided to plummet again, back down to 44.7. Back in bed we tried to get my body to behave itself. This time it did. Phew!

I got into Yoga with the Wii Fit (My Fitness Coach), even managed some minor aerobics, did body rolling to move the lymph and lots of lymph drainage techniques with adequate hydration and breaks to come back and do more, then something amazing happened. I had been severely fatigued by around 2-4pm since chemo and 7pm was my general crash out bed time. I realised my edema was right down, my legs and stomach were almost normal. By arms had only minor edema and my neck, shoulders and face were fine. Suddenly I was not in a relatively brain fogged 5-6 on Mars, I instead found it was 10pm and I was at a 9… pretty much earth level.

So would this last? Did it mean I’d stabilised? We don’t know. One theory is that chemo caused an extreme autoimmune response re antibodies that flooded the lymph system together with a level of waste it couldn’t sustain. Then, theoretically, this may have triggered off a cascade of intermittent paroxysmal autonomic nervous system effects – tremor, palpitations, hypothermia episodes as part of a severely disorganised nervous system (brain). Then, once the lymph system was unloaded, the nervous system began to reorganise and stabilise. Who knows. But what a ride!

From here day 7-14 is when red and white blood cells can go very deficient – anemia and neutropenia with expected gradual recovery after that just in time for the next chemo cycle at week 3.
Compared to what I’ve been through that may be far easier!

DAY SEVEN
Day seven on Mars, Thursday 8th Sept
Yesterday was a glorious day. I came out of a fog. I had little idea I’d been really drifting up and down states of consciousness and nothing had glued together. I knew I was struggling cognitively to hold things together, was taking it all moment by moment, hour by hour, but its funny how its not until you glue together that you realise you have no cohesive memory whatsoever of the last 7 days. It was all in fragments. Guess Mars scrambles the memory banks. But Chris pieced them all back together of our adventures over the week and somewhere amidst the relief and tears I felt like this was now the start of some kind of normality. I finally had reached an 8-9 on Mars, I was experiencing things far closer to how they are on Earth. What a relief.

DAY EIGHT
Day eight Friday 9th Sept
smooth landing on Earth since around Thursday.
body doing well now (in chemo terms)
brain is rather fried though (emerged from chemo brain on Thursday and it has fried some circuitry upstairs but I’m very good at mastering life with half a brain switched on)

sure, there’s strange little niggles, tea tastes like salt water!
my mouth feels wallpapered
every tooth has the grumps in the nerve dept
my skin says its been to Egypt

but compared to the surrealism of what the first week dished out this stuff’s a doddle.
but chemo brain is interesting… guess its very 60s and I didn’t have any LSD but I’m told I did well on Mars before I got back.

DAY NINE
Day nine, Sat 10th Sept

week 2 isn’t so bad
seems grey fingernails are all the rage on Mars
compared to week 1, even though I probably have no white cells right now
I feel, yes Sir, I can boogie….

Well, I did until Chris and I were out and I blew my nose and found it bleeding… rather alarming but only mild, no biggie…. quick check, and yes, its part of how chemo attacks the white cells, red cells, platelets, so blood clotting gets dodgy for a while, hence nose bleeds… bloody Mars atmosphere!

DAY FIFTEEN
Day fifteen, Thurs 16th Sept
At age 2 one of the things I’d been in a 3 day hospital observation for what for having no pain response. I had no natural sense of hunger or thirst and tended to drink until I would couldn’t hold any more or didn’t drink at all and it was hard to get me to eat more than a few mouthfuls before I’d wander off. In my teens and twenties I’d go without food until I was fainting and learned the signs of hypoglycemia as the signs for hunger. But if other people were eating, I’d often be fine with having some. Just I didn’t have natural food or drink seeking behaviours.

I had tremors since I was 9. I have always had low blood pressure since I can remember learning of it in my teens. I had fainting when I got out of bed or out of the bath since my teens. The pins and needles whilst sleeping and sometimes when awake seemed ‘usual’. I was in my teens when the doctor first found an irregular heart beat, but it corrected itself so nobody thought anything of it.

I knew I had circulatory issues since I had regular dark ‘ladders’ appear on my legs as a kid, and that my body could sudden turn cold and I’d go dizzy with numb fingers and toes even in the summer.

I’d had my leg muscles fail to respond and had to lift my legs out of the car or pull myself up from the floor with my hands and dropped trays and plates occasionally because my muscles just suddenly failed but it was all intermittent. I’d had Optic Neuritis for 3 mths after a flu a few years ago so had testing for MS but no signs of it so it was deemed just due to brain inflammation. I knew I had ‘panic attacks’, that my heart was having really sudden up and down regulation, that my breathing went strange, particularly when I slept and that I’d had chronic fight/flight reactions since infancy. That my bowel didn’t seem to consistently grasp what peristalsis was so had to be babysat all my life.

So clearly I was not from Earth, but from Gadoodleborgonia, but we bought a pulse meter this week (35 bucks via Ebay!). Normal pulse rate is between 60-100. Resting pulse rate is around 60-85. With exercise this would normally go up around 100. The pulse would usually increase or decrease steadily and tend to head in one direction or the other then stabilise there.

Chris checked his pulse… a fairly nice steady resting pulse hovering around 58-60 with an exercising pulse around 85-90 that quickly stabilised steadily one beat at a time back to his resting pulse rate. And mine? Well my resting rate was jumping anywhere between 107 and 89 at times within around 3 seconds, but in general didn’t appear to just increase or decrease it seemed to go up and down like a yo yo.

Chris woke at 3am so as I’d woken I took my pulse to see what it would be like on waking. I did not startle on waking nor feel anxious nor had I been having nightmares etc. My pulse rate was 110 BPM and this then jumped up and down between 98 and 105 then on sitting up it went to 95 and then dipped straight to 85 and then back into the 90s. Chris took his for comparison, it was 59 and stable. I took my temp to see if there was any relationship there but that is normal and has been quite stable since around day 7.

On waking at 7am my pulse was 98 and jumped about until I went upstairs. Then it stabilised for around 10 seconds at 85, the longest it has so far stayed stable, then suddenly leapt to 115, then fluctuating again until staying more or less in the 90s.

On eating lunch I checked my pulse rate. It jumped straight from 74 to 83 then straight from there up to 101, then to 111. Wild stuff! I AM an alien.

I measured my rate upon leaving home for the GP, it was 100 (resting). I walked 15 minutes to the GP and by the time I got half way instead of going up it had gone down to 74! By the time I reached the GPs office I felt it was up and checked, half expecting something scary or excessive, but no, it was a relatively low 130! Then in 2 seconds it was back to 80! Then of course, jumped up to 100… why not?

I researched this a bit this morning and found its closest description as Postural Orthostatic Tachycardia Syndrome which I see tends to happen to those with CFS/FM. I had dx of CFS since my 20s and of FM since my 30s and I see that these seem to all come under the same umbrella of Dysautonomia (Autonomic Nervous System effects). I see that leaps of 10-30 BPM are not unusual and high pulse whilst sleeping is also not unusual with POTS.

I have had the associated dizziness whilst sleeping and getting up probably since my teens but thought it was simply low blood pressure or circulatory problems (which I have always tended to and had the circulatory issues since childhood). I hadn’t linked these with the tachycardia whilst sleeping but understanding this stuff helps me grasp it as a system.

Is irregular pulse and other Dysautonomia symptoms listed as a side effect of the chemo drug Taxotere? Yes, as a rare side effect. But I figure I’ve survived this long with this stuff so its not going to kill me just because its more present with the chemo. And dying from secondaries sounds like a much bigger side effect of not doing chemo, so chemo cycles 2, 3 and 4, here I come.

Saw the GP and took the pulse meter with me. He checked his own to check the pulse meter was functioning properly. Then he took mine which did its usual fancy dancing there in his office and he confirmed, yes, this was Dysautonomia. We discussed whether it was a serious health risk and I told him that even with 15 minutes of exercise it only reached 130 and that its lowest had only been 77. Given dangerous would be below 50 or over 180, seems that although it is clearly highly irregular and lacking regulation, it is dancing safely within the safety range! We talked about whether it would be worth doing something about this after chemo but the GP felt they’d only say what we already know, that its Dysautonomia and that unless its being dangerous, it is just the way my brain and body work (or fail to work) together.

WHITE CELLS
Oh Where oh Where have my white cells gone, oh where oh where can they be…..

did a blood test on Tuesday 11th Sept to see how much of my white cell count the chemo had knocked out.

White cell count was 1.6 (ref range 4.0-10.0)

this included:

Neutrophils 0.00 (ref range 2.00-7.00)
Eosinophils 0.00 (ref range 0.02-0.50)

and

Basophils 0.02 (ref range 0.02-0.10)
Monocytes 0.70 (ref range 0.20-1.00)
Lymphocytes 0.92 (ref range 1.00-3.00)

Guess that’s my visit to Neutropenia… now either they make some more in there or its, where’s the Neulaster?

DAY NINETEEN
Day nineteen, Tuesday 20th Sept
pop the corks, roll out the champagne… guess who got a normal white cell count!
from 0.00 to normal in 8 days!
woo hoo

sure I did quite some protocol for that… won’t bore you with the details but I’d like to thank a soy/legume free diet, glutathione, echinacea, astragalus, propolis and their pals like vit D drops, liquid multivitamin-minerals, acidophilus, sleep, sunshine and love probably helped (thanks Chris and support team).

Oncologist says its not usual people go down to zero in the white cell dept but not unheard of
and he was really pleased to see it recover itself
reckon we were both rather gobsmacked

yay!!!

never thought I’d be so happy to get back to chemo
but with no white cells it was looking rather bleak
no white cells, no chemo and that meant either Neulaster to kick start them (read probably bone pain and possible spleen enlargement as well as risk of rupture and bye bye spleen and chemo) and the other choices… call a first degree relative for bone marrow (aik! … if you know the family history you’d know that’s about as appealing as asking Hannibal Lector for a date) or leave the chemo queue and take my chances with floating cancer cells they’ve already said have a 1 in 4 chance of killing me with secondaries if I don’t kill them first.

So scareeeeeee stuff!

Anyway, I’m so smiling right now, blissed
Chemo here I come
Cancer cells, I will kick your butt to Mars and beyond
side effects, I’m bigger than you, and outlasted you already
another 3 chemo cycles, bring it on
I’m getting my new expiry date

just watch me.

now where’s that space shuttle
Mars, you prepare that landing strip
I’m coming for trip number 2.

Merrily,

Rocky Balboa

DAY TWENTY
Day Twenty, Wednesday 21st Sept
at 8pm yesterday I was celebrating white cells, but at 2am this morning I was on a drip at the A&E for a urinary tract infection and let go at 6am with a good ol’ Bactrim type drug… for those who don’t have the luxury a UTI means urgency to pee every 30 min, you pee around a teaspoon which feels like peeing pure pain (and can be blood in the urine which is very unnerving) and still feel almost immediately bursting to go again. So that was my night in hospital. Grateful they have got on the case though. I thought it might put a halt to chemo tomorrow, but nope, its apparently back for cycle 2, UTI infection and antibiotics and all… wonderful… hmmm… but I know I’m lucky, because if we put off return for the next chemo cycle cancer cells can build resistance to the drugs and then chemo is useless and ultimately the cancer cells win. So I’m boldly taking my medicine tomorrow.

Well, by lunchtime the Bactrim type drug worked a treat on the UTI… yay, not peeing blood, no pain, not weeing urgent teaspoons of wee every 30 min, I have my body back! Yay for Bactrim and its cousins! And the steroids i have before a chemo session made me EAT… I ate and ate and ate… I had been off my food with the infection… so after a good sleep, Rocky IS ready for chemo, antibiotics and all,…. bring it on I’m ready for my return trip to Mars, I’m off to the slip stream.

CHEMO CYCLE 2/4
DAY TWENTY-ONE
Day Twenty-one, Thurs 22nd Sept
The oncologist, a friendly, patient, personable specialist named Dr James decided that after last cycle’s fiascos with asthma, Autonomic Nervous System/dysautonomia dramas and edema that we’d significantly up the steroids this round. My white cells had shown themselves on the blood test but turned out to be rather toothless tigers the moment they were blinked at by a urinary tract infection. This is because they are like soldiers but without weaponry, they went to the front line and forget their jobs. Bummer. So it would be Neulaster injections for me tomorrow, to cover the bases. The idea is that if I have enough semi incompetent white cell soldiers that if there’s enough of them they just might work out how to fight bugs (I’m also IgA and IgG2 deficient). So Neuslaster can kick start bone marrow and harass the spleen, cause bone pain, but who knows, my body is Gadoodleborgonian, it may bring me nothing but joy!

I had worked on my veins, worn my scarf, leggings, jumper, fingerless gloves, taken Manuka honey the last two days, was well hydrated. They looked like Arnie Schwarzenegger veins. Unfortunately this meant that I forget to remind the very friendly oncology nurse that under that impressive vein facade were spindly little veins. In she went with the regular needle to insert the cannula, again, and again, but it was going nowhere, the vein narrowed to a spindle. She quit, leaving a pumped up 1 inch raised bruise across the once wonderful veins in the back of my only usable hand (the other can’t be used because of Mastectomy). Buggar, I forgot to ask for the baby needle. So then she tried with the baby needle and luckily it worked higher up my arm.

Chemo went well, just me and Chris this time, Denise had to drop out on account of having a cold which would compromise chemo patients. It went fairly well, then the usual chest tension and start of congestion but no biggie. The bladder decided to dwindle to working by the teaspoon full, the bowel hadn’t spoken to me since yesterdays pre-chemo steroid prep (Dexamethasone). But I was armed with compression stockings and had been on a soft food diet, had my dandelion coffee ready and now sugar free cranberry juice. I’d be ok.

And it was pretty good really. Edema centred around my belly and diaphragm was a rock. But ankles, legs, groin, arms, neck, face really got off lightly this time thanks to walking, yoga, lymphedema massage and home made compression sleeves for my arms, and of course the extra steroids.

Chris and I did the walk till you fart post dinner walk (the where there’s farts there’s hope program – see zero peristalsis) and I had already started Coloxyl with Senna this time. Up from 2am every hour the bladder slowly came back to life, by 4am it was hallelujah as the heavens…. no… just my bowel… opened up – yay!

Then the fun began. Found problems with breathing, the ‘effervescent lungs’ thing I had the night of the first chemo cycle… I found that in sleep/upon waking that my breathing was really slow and missing some breaths. I went and took Benadryl around 3am and Symbicort again, but whilst there was come lung congestion, this was really slow to work. Laying flat seemed to make this much harder so I propped myself up (blood pressure?). I used the pulse meter to check where things were at to be sure things were safeish. Blood oxygen was fine at 97-99 but resting pulse was jumping between 46-65 (with highest rate of 77… Bradycardia is when its under 50). This is very different to the last three weeks where resting pretty much never saw a rate below 77 and fluctuated between 85-110 (Tachycardia is when resting pulse is over 100). I assume its the change in the steroid dose. As long as its all safe.

HOWEVER, I felt the lung issue was perhaps a muscular ANS response thing, that the message was getting a bit messed up in there and that this was messing with irregular breathing and that was leading to the build up of muck in the bottom of the lungs. I have had some muscular ANS stuff in the past, some struggles with my legs, arms, intermittent, unnerving but no biggie, but when it effects my respiration this worries me and I’d like to know how safe this situation is.

I did find that being upside down in the massage chair on the tapping function regulated the muscular/lungs thing was being. It seemed to normalise the breathing which became regular and deep breathing though the pulse rate stayed around 46-65.

When I was a kid I was, like many kids with autism, always using vibration/rhythm to regulate my body. It was like the vibration of the car got my brain and lungs working so I used to lay over the differential in the centre floor of back seat. At home did similar laying my body on the washing machine, the vacuum cleaner, my father bought an exercise machine with the belt drive thing and I felt calm in it, I’d breath regularly. So I think its similar. So this being the possible case I will seek out a better solution than getting only 15 min sleep at a time in the massage chair cycles… I can buy a flat massage pad that should do the same tapping cycle and should be able to sleep on it laying down. I do think this stuff may be common in some people with autism though those who use vibration this way to get their brain/body communicating properly are usually functionally non-verbal so few have written of how or why it works for them.

I could probably improve the Bradycardia with coffee but the dandelion coffee has some level of caffeine so seemed to have no effect in raising pulse unless it would have been lower without it. Ironically, the Ventolin would probably have sped up the pulse but I didn’t want the tachycardia/tremors/inability to walk straight. I think that the issue is not so much asthma perhaps (as the blood oxygen seems fine) but that there’s a regulatory issue with muscles and breathing and this leads to accumulation of muck in the lungs. So muck sample to pathology now. Anyway, its probably all just the first 24-48 hrs and this ANS/Dysautonomia stuff will iron out again.

DAY TWENTY-TWO
Day Twenty-two, Fri 23rd Sept
Wow, the dead doth walk. Sure my white cells may be zombie cells that can’t fight their way out of paper bags but I was still up at 8am and able to have a breakfast after sleeping from 11pm-2am then babysitting bowel, bladder and lungs all night with strategies from sleeping on the toilet to in the bath (great breathing posture and in a room of steaming eucalyptus oil thanks to a new single electric burner we bought to turn the bathroom into an instant steam room), to sleeping upside down in the massage chair on 15 minute cycles that at least kept breathing regular. A short sleep later on the sofa as Chris worked from home tapping away lightly on his laptop and we were off for lunch then on to the hospital for a Neulaster shot to try and arm my white cell soldiers with back up recruits so I’m not a walk in for every bug in society. The shot was easy, straight into the stomach. Sure, that sounds SCARY but its just into the fat, not inside your gubbins, it just works its way to your spleen and bone marrow – magic huh? Anyway, asked the oncology nurse does it really risk enlarging and rupturing the spleen or is that just in the usual disclaimer side effect paper work. She’d never seen it happen and that was good enough for me.

On the way home we stopped at Myer where they sold roll out massage mattresses that could keep my chest muscles on a vibration cycle to remind my brain they were still there and to keep talking so I could breathe through the night whilst my scrambled overwhelmed chemo brain tried to reorganize. There was nobody on the shop floor but I found a manager in the office who was wonderful and really helpful. Soon a floor manager was with us and we were in the managers suit laying out the roll out mattress on their sofa for me to try… wow, the cancer red carpet! Normally I’d find that really awkward but I felt utterly crashed out, poorly, overwhelmed and I could have slept 3 hrs right there and then. They had a sale coming up in 15 days but decided to give me the mattress at the sale price today! How lovely. I went home, Chris set it up, tucked me into bed and I slept like a baby for 2 hours. I went home, Chris set it up, tucked me into bed and I slept like a baby for 2 hours. Got up and my pulse rate had normalised to 75-85!. No Tachycardia, no Bradycardia, even the wild jumps seemed stable. Don’t know if it was the Neulaster greeting my immune system, the mattress, the extra sleep or the abundance of good will around me. But it was a good day.

So now I get ‘Frequent Die-er points’ at the GP where he bulk bills me (very kind), the lovely folk at the Manuka health food store give me a discount on my supplements (I said, ‘oh no, is this because of cancer?’, she said, ‘I’m afraid so’ and we laughed), then Bendigo bank which had taken $400 from me for cancelling my eftpos terminal when I couldn’t work anymore were alerted to the fact this was due to cancer and reimbursed me (thank you kind bank) and the wonderful folk at Footprint Books (who distribute my books here in Australia) took back my signed copies to redistribute until I can start lecturing again, allowing up to use the reimbursement to pay medical bills. So cancer brings out wonderful things in some, the family friends who bring soup, offer to help clean, write amazing daggy uplifting kick-cancer’s-but songs, my tired man who I still find enough zombie energy to jump on and sing at 8am as he sleeps happy I’m ok after the night of chemo treatment 2. The birds are singing, the sky is blue, ELO sings Mr Blue Sky in my head. We walk at night, looking at stars and silver trees, laughing at farts if we’re lucky enough to muster any. Life if great.

DAY TWENTY-SIX
Day Twenty-six, Tuesday 27th Sept

Wow, aren’t steroids illusional! They gave me extra steroids during chemo to counter the edema and Autonomic Nervous System issues (Dysautonomia). I thought, wow, my brain is switched on, I didn’t get chemo brain this time, wow, I even could pee and shit within 24 hours (albeit Coloxyl assisted But twas an illusion!

By day twenty three (the Saturday after chemo 2) I was on the floor! Really challenging to stay standing, breathing, heart all misbehaving in the dysautonomia dept and bowel and bladder were saying ‘we’re confused’, body clock shot, chemo brain definitely moved in, tachycardia, fainting, blurred vision, energy was around the most challenging CFS style fatigue I’ve done and I had pretty severe CFS (Chronic Fatigue Syndrome) in my 20s and 30s so this was ‘interesting’. So hard to eat or drink with no messages happening and nothing moving in the bowel dept, and the bladder being brainless.

Crazy times, but Chris handled it so well, helped me get through this crazy day and I was so good, so on the case to kick start the brain-bowel relationship… meals were 3 teaspoons at a time followed by at least 50 steps of walking, liquid was sipped through the day, vitamins were when I could stomach the idea. My weight had slipped. I was down from our glorious achievement of 58.8 to 55.5 (I had been a skinny but ok 54.5 before our pre-chemo weight gain plan). So the infection and antibiotics had used up a lot of stored energy and I needed to get it back on, buggar, and whilst feeling the bowel had gone awol and every time I ate a few mouthfuls my belly just said ‘inflatable balloon’ (without the luxury of gas) so farts became our focus… it was all about getting me farting – please!

By Monday had mastered the art of constipation massage and was graced with farting and gurgling (yay!!!) and cramps (better than no movement) and thanks to the internet have added a warm wheat bag for my belly to my arsenal… it can apparently help ‘melt’ poo and combats nausea at the same time!

I began to emerge again to awareness I was in chemo brain city but at least able to eat a whole tuna cracker anddddd 6 pieces of sweet potato in one sitting, no less and taking no more than 30-40 minutes to complete! A cleaning angel drifted by so lightly and unobtrusively dusted and vacuumed all our downstairs dust bunnies to unburden my immune system – wowwww…. wonderful.

By Tuesday I at fish and chips, with plenty of juice to help liquify it but so wonderful! Of course we all know that the best food on Earth is fish and chips, ask any new arrival By 6pm Tuesday my brain finally began to stay online, the Dysautonomia stuff was manageable, eating, drinking, energy levels rather reasonable under the circumstances. Yay!!!

Plus had a wonderful gift from lovely folk from Upper Gully Organics… a piece of the most wonderful GF/CF/soy free/sugar free passionfruit and raspberry cheesecake they stock from Naked Cakies… thank you what a reward for making it back to Earth!

Of course landing on Earth I find I am greeted by my alters waking up in DIDville. First Esby, disoriented and teary as with chemo 1, wanting to know what had happened and why did I do bad things to the body. So I counseled Esby, reminding her we have two more of these ‘bad things to the body’ sessions (Esby can’t process the idea of chemo or what what happens to the body isn’t directly from me, ie via medical treatment). Next Carol joyously arrived singing the Mickey Mouse Club March with the lyrics changed to S.A.M.U.E.L, that spells Sam-well-y…. and announced that when Ruby goes (Ruby is our remaining breast due to leave in the 2nd mastectomy after chemo is finished) she wants a pink leotard with skirt and pom poms and wants a big ‘S’ sewn on for ‘Samuel’, which of course was just wonderful, funny, moving, and then Da took the piss, drove Carol into the usual picked on sister sadness and it was DIDville as usual. More counseling later, Da understands Carol is very brave to allow herself to be so vulnerable and daggy and that takes admirable guts. Da is determined now to be a good brother/sister not a piss taker and will even be Carol’s fellow Samwelly-teer

And then there’s me, holding the team together, or perhaps they hold me together, or we take turns. And then there’s the world of people outside of me many of who each bringing their magic to life around me.

DAY THIRTY-SIX
Day Thirty-six, Friday 7th Oct
Well, what a lovely break from chemo brain. Sure, its ups and downs but enough energy to play. Got arting with arty pals and paint, did some gardening, lots of evening walks and home cooking with the man, wonderful home restauranting in ‘Cafe Chris’ and the ‘Samwelly Restaurant’ (at our place). Sure, there’s niggles, like a resting pulse that rarely comes out of tachycardia (100-110 is getting usual as my resting heart rate), sudden blood pressure reactions to the pulse leaps from laying to standing with associated fainting and blurred vision, but its stuff I’ve had since at least age 13, just more of it,

And when I faint I don’t drop, I’m like those fainting goats, I just stiffen, so its funny how the built in faults are sometimes useful. I have never fallen, in the past even had seizures sitting up, had shock so bad I peed but still stayed standing, blacked out a few seconds driving and my hands just stiffened on the wheel, so a few minor blackouts when standing are a doddle, rather like taking drugs maybe… the blood just drains out of my hands, arms, face, I feel it all go tingly, vision fuzzes and blanks, my body stiffens, then it all comes back… its my own free ride at Luna Park and I don’t pay a penny. So needless to say, don’t worry, its all part of funny brain syndrome and you know why this crap is there? Because it reminds us of how LITTLE this stuff relates to the wholeness of who we are. We are each so much more than these quirks, episodes, mini dramas. What’s important is to sing, dance, dag out, play, love, eat and make good tea in between and we are good at doing just that.

But, seriously, I’m doing really well for a chemo patient, I’m not in denial, I really am and the Neulaster has really helped sweep the immune issues out of the way so all I have left is this Dysautonomia stuffola and I’m fully strategised to manage most of it and I’m fairly sure its not going to kill me and I have faith that once chemo’s done I’ll get a neurologist to help me sort out what’s left.

So its my birthday this week… in fact its the day before chemo… so I will eat soup and take steroids that day, but its going to be nice soup at a nice place with great company. And mostly I’ve moved my birthday to Sunday instead so I can have a BBQ and eat GF/CF/sugar free/soy free wonderful home made cake and get on the trampoline and dance and dag about with a handful of lovely fellow dags.

DAY THIRTY-EIGHT
Day Thirty-eight, Sunday 9th Oct
It was rainy, I didn’t know where my immunity would be at and knew I might have to wear a surgical mask if anyone had bugs, I wasn’t sure how much energy I’d have to make a BBQ, and I figured I’d be lucky to have 6 people who’d show up. But, no, I had a wonderful happy-non-birthday with 18 great dags who braved the rain for a BBQ party on the porch with me and Chris. I went on the trampoline, played with the many colored ribbons that arrived (attached to presents, the greatest of which was the actual PRESENCE of those who came), did various scenes from Grease, danced, at GF/CF/sugar free/soy free home made birthday cake me and Chris made, ate wonderful home made banana Thai custard, watched Chris do Diabolo in the garden and enjoyed the delightfully ecclectic but ‘Simply Being’ mix of those who came to help me forget the shadow of chemo cycle 3 that was hanging over my birthday. One of the kids here summed it up when she said ‘you make chemo look like fun’.

My resting heart rate may have been in tachycardia all day and my vision was sometimes blurred so I couldn’t recognise people coming down the path except by their movement, but none of it mattered. I felt simply human, happy, in the company of real, daggy, lovely, fun loving people and it was a great way to (almost) turn 48. So, chemo 3 on Thursday… so what! I just had the best birthday. The rest is just ‘details’

DAY FORTY
Day Forty, Tuesday 11th Oct

I saw the optician who has tested my sight each year.
I had a glaucoma test last year which was clear (the standard full screening thing). So she re did the imaging for this and found a problem with the nerve in one eye, that had deteriorated since last year. I don’t experience pressure in the eye but she wants to do a field test after I finish chemo because she feels there’s some indication of early glaucoma. I doubt this was caused by the chemo and I have a gene marker for glaucoma (which surprised me) and I see I had developed the additional short sightedness in the last year at least before starting chemo. I see some auties also have glaucoma and that it can overlap with auto immune dysfunction. I’m not worried. But wow, 47 with cancer, 48 with glaucoma, what’s next, stand on my head syndrome!

DAY FORTY-ONE
Day FORTY-ONE, Wednesday 12th Oct
A glorious birthday after all… soup and fruit platter up at a MUST GO place, Coonara Springs restaurant, overlooking views of the Warburton and Dandenong Ranges and glorious gardens with the most wonderful company I can imagine – Chris A Simply Being pal dropped by later and plenty of laughs and calm, realness and balance. Can’t think of a better state of mind to step onto the runway again for the rocket to chemo 3.

CHEMO CYCLE 3/4
DAY FORTY-FOUR
Day FORTY-FOUR, Saturday 15th Oct
Chemo 3 went as usual, had some Mesna added to my cocktail of Cyclophosphamide (cytotoxic chemo drug) to limit cystitis in the bladder department. So that now meant my original chemo 1 cocktail of Dexamethasone (steroids to counter autoimmune responses), Cyclophosphamide and Taxotere (cytotoxic chemo drugs) plus Emend (antiemetic/anti vomit) got extended into all that plus double the steroids and adding Neulasta (stimulates production of white cells in immunodeficient breast cancer chemo patients) and Coloxyl with Senna for the next few days because my poo department closes up shop on the steroids.

Then because, in spite of the high steroids, I kept having allergic reaction so they added an IV antihistamine (ouch, stings) but at least the chest constriction and sudden sinus congestion and catarrh starting to choke me quickly died down.

By 1pm my last natural pee left home and I didn’t see another until 2am. To put that in context I had taken in around a litre of drugs and around 1 litre of drinks by then and my bladder was saying no go Joe, shop closed, go away. Now the bladder clears up the kidneys, which clean up the blood, which cleans up the lymph. So with the backlog in the system, moderate lymphedema set in again and I started swelling up from my feet, to my legs, to my distended belly, to my neck to my arms and face. It was time for proactive measures. If the bladder wouldn’t take up from the kidneys it was time to fully empty what it did have in there to make it feel like a desert and take up some of these fluids going around places they shouldn’t. Yep, it was the ‘trampoline strategy’. It was late, the antihistamine had me mega drugged, asleep on my feet, but I had to go for gravity feed (read forcing involuntary urinary incontinence). So onto the trampoline in the darkness outside, hose at the ready to hose off the cytotoxic drugs in my urine (nobody will ever dare use our trampoline again now, I’m sure) and with no knickers on it was time for me to jump (yes, I had boots on). It took 3 phases but it worked and finally by 2am my bladder was talking to my kidneys and we were piddling naturally! Now the lymph could dump into the kidneys and goodbye to being baloon-Donna. Phew. Sure it meant peeing every hour as the bladder got the idea ‘oh, yeah, we do have a lot of work to do’.

Lots of yoga for the lymphedema, lymphedema massage all night, compression stockings and my adapted compression sleeves to get the lymphedema out of my arms too, but by morning other than looking like a swelled faced sunburn victim without the sunburn, I was doing really well.

Next was the effervescing lungs, because the antihistamine was starting to wear off which meant back came the choking, the chest compression, the catarrh, the phlegm and that meant find the Benadryl, take the asthma spray, and the Vicks Vaporiser full of lavender and eucalyptus oil was my friend all night.

But with all the protocols working, the bounce back has been great. Still might have the steroid crash (tomorrow) which could bring fatigue for 2 days, and out of chemo brain again by day five of this cycle, but I’ve learned the drill. One more chemo to go! Then done and dusted and onto hormone therapy and mastectomy number two then REHABILITATION from being a Mars veteran.

DAY FORTY-SIX
Day FORTY-SIX, Monday 17th Oct
I must have been dreaming. What post steroid haze was I in when I thought I’d touched down? Last night I’m sure I was abducted by Martians, taken away, experimented on on every level then what jumbled disarray that was left was put back into bed somewhere between the toilet, the sofa, and our bed.

More clearly, by late Saturday the steroids had worn off and fatigue hit with an almighty crash. The poo department had given me false hope and the wonders of Coloxyl with Senna (and associated cramps and spasms in the early hours) were, like Obi Wan, my only hope. Had reached the point it was hard to wash or eat or drink without falling asleep mid action and DIDville decided to wake up in the midst of it all with several alters each doing their version of how to land this Apollo 13 in distress which is rather like having several different versions of ADHD going off in your brain, or to be more specific, Willie’s OCPD, Da’s bipolar, Addie’s Generalised Anxiety Disorder, and Marnie needing to vent.

By 8pm we were way crashed out, struggling to breathe with autoimmune distress dramas and drowning in catarrh like gemullock whilst feeling the chest and throat are being pressed like a vice. Then the fatigue was so overwhelming breathing was so shallow and dysautonomia was back with a vengeance dancing my resting pulse everywhere from 80-115 every few seconds so the potential to organise brain and body were not on the cards. Breathing stopped regularly which is kind of like dying every few minutes and with it comes the dizziness and further disorientation – you couldn’t buy drugs like that!

Then at 2am can chills, tremors, body jerks with my teeth chattering then clenching and breathing in distress. I had sweats but with a body feeling it was in the fridge and a temp of 37.8. My brain was disorganised and misfiring all over the place! Oh buggar. So Chris and I kept it monitored knowing it it tipped 38 the next stop was the hospital. Luckily, after 45 min of laying sweaty and shaking in the arms of Chris, the tremors and chills chilled out and the temp came down to 37.4. Hooray. Boy were we relieved. Nevertheless, we kept watch the next hour to be sure we were in safe waters.

Next my highly cytotoxic bowel was carrying on like a doco on IBS. So that meant toilet 8 times through to dawn. I’d beaten the fever and chills, now I was too hot to sleep! Off to the sofa. Couldn’t breathe with my head down, couldn’t sleep with my head up. Pacing in exhaustion like a horse with colic. Finally, fell asleep hoping and believing the mantra ‘the body is resilient’ and that it will try and survive with or without my help, that one can live with very little breathing albeit with reduced brain function and who needs that anyway on a night one has been abducted by Martians.

And today, sleeping off exhaustion, rediscovering my mind, body, stomach, realising how shot through the brain I got last night. So many simple things just look like rocket science. But I know that by Wednesday all will be well again and 2 fairly easier weeks before the FINAL chemo cycle. Then chemo be gone!

DAY FORTY-EIGHT
Day FORTY-EIGHT, Wednesday 19th Oct
So nice to be coming out of chemo brain, I am born yet again… that’s 3 times now. Had a lovely day in the hammock on the porch, hanging out with Chris and other than having virtually no auditory memory and saying yes to things I have no idea of and missing large chunks of executive functioning I’ll have to regain these next two weeks, twas a fab day. Took my temp on our way out of the house though and found it was 37.9 – hyperthermia again. No sweating and no idea I was 1 degree under the danger level of 38. Buggar. So something seriously odd in the temperature regulation department. We cooled me down because my brain can’t seem to do that job at present and in 10 minutes, sure enough, 36.5 again – groan. Guess we’ll leave this dysautonomia dramas for the neurologist, but in the mean time its not reassuring to know that temps over 38 are bad news for the brain and organs and I certainly don’t want to see these go any higher.

DAY FORTY-NINE
Day FORTY-NINE, Thursday 20th Oct
Saw the Osteopath, he found the lymph wasn’t draining on the right side so got to work on it, the lymph at the back of the neck was pretty blocked, the back muscles were really tense and the diaphragm muscles were seized up so that was probably why it was so hard to breath!

DAY FIFTY
Day FIFTY, Saturday 22nd Oct
Lovely day, so much more with the land of the living. Chemo brain still hovering but mostly can cook and wash and do most things again without having these sudden holes that make me look more clearly ‘brain injured’. Like I would sometimes be fine then stare at something having no idea how to use it or know I needed a plate and cutlery but no idea how to co-ordinate the getting of the two, or know I needed to dish up food but having forgotten how, at least now I had remembered how to co-ordinate the simple stuff again – yay.

But with chemo 4 on the horizon (and causing understandable trepidation, we decided to look up how to protect my brain better. We found that although I’m taking a liquid multivitamin mineral in the morning with good electrolytes and also 1500mg Glutathione, that both of these could reduce seizure potential in the brain that may have been a risk on the Sunday night shenanigans with the tremors and jerks in the midst of dysautonomia chaos. Further, that electrolyte imbalance can worsen dysautonomia episodes and taking adequate supplementation of these can reduce those episodes. Yay, new strategy, so in chemo 4 we’ll get me on the supplements before bed to avoid me waking at 2am with a brain in such chaos it can’t regulate breathing, heart, circulation, temperature etc. Suddenly I felt empowered. I could handle the tachycardia, the stopping breathing, the diaphragm muscles not working, the temperature challenges, the tremors, numbness, disorientation, even my body doing involuntary clenching and jerking spasms but not all at once. Now I had something, at least something to give me hope I could minimize these things coinciding in my sleep.

Learned the nerve damage in my eye may be related to dysautonomia and not glaucoma at all… is that good? I’m sure that once I can stabilise the dysautonomia the nerve damage in the eye will not progress.

CHEMO CYCLE 4/4
DAY SIXTY FOUR
Day SIXTY FOUR, Saturday 5th Nov

LAST CHEMO!
Did chemo 4 on 3rd of November. I went armed with a plan. Oncologist agreed that doubling my liquid Hivita and Glutathione 1,500mg for the day before and up to day 4 after chemo 4 would do me no harm. The theory was that some sites reported that elecrolyte imbalance was found to underpin some episodes of dysautonomia and Gluthione was found supportive.

I knew that Glutathione contains Glutamine which I had already widely used for dyslexia/autism related info processing issues/LD/brain injury issues and found it great support, so figured it could help with the severe brain fog of what were probably dysautonomia episodes rather than ‘chemo brain’ (or indistinguishable). Also the Glutathione contains Cysteine which combats catarrh attacks, including puss in the lungs which may have been the ‘effervescing lung stuff I always experienced the night of a chemo treatment together with rather strangulating catarrh and helped along by diaphragm muscles that had gone into spasm and left the only place to get breath as in the upper chest and throat (read feelings of suffocation, shallow breathing, stopping breathing in my sleep and associated disorientation in the brain-body departments). I was also armed with training from the Osteopath on how to release a diaphragm and abdomen that had gone into spasm, so Chris helped me with that and by sleep time I could actually breathe with a whole rib cage – luxury!

Back from Mars now, all 4 tickets spent now. No more trips back. Got my new expiry date. Got my spring clean.
I will now officially be someone who has theoretically moved from a 25% chance of being dead in the next 10 years from secondaries to someone who has only a 10% chance of the same… so I’ll watch out for buses

Chemo 4 was not as rough as the other three thanks to some new interventions.

I was able to breathe and use my diaphragm muscles for the first two nights… which helps. I didn’t start drowning in effervescing, fluid filling lungs and strangulating catarrh all night… which was such a luxury. I didn’t have shallow breathing and stopping breathing all night, no respiratory distress, my still fluctuating pulse and temperature stayed in the not too scary range. The pee and poo departments packed up and left home but I could start to pee chemo drugs from 3am (unable to pee fully since 1pm) but all departments showing good progress. Lymphedema really low this time and finally a relatively functioning post-chemo brain… I can understand, even roughly retain an unjumbled sentence this time!!! I can make my breakfast and remember what a bowl does, I can cross a road and not lose the traffic, I remembered that Friday WAS Friday.

So that’s it folks, all onwards and upwards from here.

I start hormone therapy on Dec 1st (Tamoxifen) but after chemo it’ll be a doddle…. its ONLY for 5 years! It will stop estrogen production (yeah, read menopause etc) and that’s good because my cancer cells use estrogen to regrow themselves. I’m allergic to soy and lentils so won’t be going there to replace estrogen, in fact that’s not a good plan with cancer cells that will like estrogen wherever it gets it. But, really, I think its rather a bargain.

In Feb I’m going to say goodbye to one booby Ruby, my remaining breast. I’m going with the Kiera Knightly look. My originating cells have a 13-38% return rate to the other breast (50% to the originating one) so Ruby reminds me both of what I’ve already lost and what may return for me to have to do this all again, and I’m not a prosthesis girl… I like to feel my chest as a whole and it is still a chest, its not breasts, but it is still a whole chest and it feels natural.

Here’s a great slideshow of beautiful topless women who have had breast cancer that really moves and connects me as a woman, embracing my sexuality and attractiveness as a one breast and soon to be breastless woman.

As for Chris, its his celebration too… we’ve been such a team, enjoying love, home, laughter and finally we can breathe as two people who survived life threatening illness this year (between April-June) Chris had a severely blocked bile duct, then pancreatitis/liver problems, then complications from gall bladder removal and spent 3 weeks in hospital but all clear now and came out together the other side knowing we now both have longer expiry dates and so wanting to spend those out together with each other and those around us.

So finally, its time to pre-announce A PARTY!!!! We’re throwing AN OLD FARTS (end of chemo party). The farts part has its own history… so there’ll be plenty of fart jokes, part poetry, fart stories!

SO GLAD MARS IS OVER!
The soldier returns to civilian life.

DAY SEVENTY
Day SEVENTY, Friday 11th Nov
Well, talk about jumping the gun.
I was so eager to be over chemo that I overlooked a few things… like that on the Thursday of chemo 4 I actually would have chemo drugs in me for the next 3 weeks killing off my cells. And there were more surprises. By the Friday after chemo, Chris was facing he had a raging cold developing. A cold, nah… I’d fought that off on Wednesday, the sort throat, the burning up the back of my nose… I’d done a nose flush and left it washed down the plug hole… er… denial is a wonderful thing….

By Sunday denial was knocking at the door. Around 11am I noticed that I had developed a 12 cm x 4 cm purple bruise on my forearm where they’d done the IV. It was painless and there was no sign of it on the Thursday, 36 hours earlier, no pain with the IV, so I thought it was dirt. Sure, they’d failed on first try to canulate me (stick an IV tube into a vein) but so what, the veins on my hands were shot, the one on the inside of my forearm wasn’t working, and they’d gone to the outside of my forearm where I’d never had an IV, but all in all I was just so glad they did get a vein on my last chemo that I didn’t give a damn what was happening over there. But I’m sure there was no bruise there. Oh well, best I gave the nurse a call, after all a 12cm bruise out of nowhere is rather LARGE! It was at least half the entire length of my forearm. So the nurse was concerned but reading my notes saw I have a rather reactive body, high inflammatory state, etc, so we decided that given I’d done ice and bruise cream we’d give that a chance until 5pm.

5pm came and the bruise was the same. Chris’ cold was atrocious. We were both in surgical masks by then trying to avoid me catching his cold (yes, denial) and at least now we could snuggle up and try and celebrate our presumed freedom from chemo. By now I was having temperatures of 37.6, 37.8, 37.9 but it wasn’t a fever yet so I refused to think I had a cold.

Monday morning we went to the oncologist to let him check out the bruise. He was ok with it not posing complications… didn’t think it meant liver damage, leukemia, chemo drugs bleeding into the skin tissue or allergy so we breathed a sigh of relief and went off to celebrate goodbye to all this chemo stuff.

By 7pm though, my temperature was 38. By 11pm it was 38.2 … the card in my purse said any temperature over 38 and we needed to go to the hospital and get a blood count in case I was again neutropenic (no immunity) which could mean I risked being overun by my own body’s bacteria. We called the nurse and she agreed that although I was feeling ‘fine’, I could be at risk of neutropenia as the Neulasta wouldn’t have kicked in yet. Off we went to the local hospital.

I was asked if I felt well. Sure, no problem, just the temperature thing. Chris was the one with the cold. We were put into a small storage room, me and Chris in our surgical masks and after they took blood they went off to test it all which would take an hour. I snuffled. 2am we were still in there, now laying together on the pillowless ‘bed’. Suddenly I snuffled, one of those big gooby snuffles one has with a cold. ‘How did I not notice that?’, declared the doctor. ‘I didn’t want to be ill’, I explained, presuming he’d understand that I’d just let it all sit there until then or waited until he was gone so he wouldn’t suggest I was ill.

At 2am the doctor came in with results. My white cells were lowish but not depleted (and we were still waiting for the Neulasta to kick in by day 7 of the chemo cycle, which would be another 3 days). I was ready to go home. But I wasn’t getting out of there that easily. My inflammatory markers were 38 (normal was no higher than 5). It was now hospital protocol to keep me in and give me IV antibiotics. With a 12cm bruise up the forearm they last gave IV and my other veins having failed chemo 4, I was obviously freaked out. No way, I wasn’t that sick, give me a pill, no needles, I’m going home, see, I’m fine, noooooooooooooo. My dream of being free from the dramas of chemo 4 were blowing up in my face. Chris would be going home and I’d be imprisoned in a hospital attached to an IV with a needle in my arm all night and I was to be transferred the next day to what we thought of as the CANCER HOSPITAL…. where the oncologist could keep an eye on this inflammatory state and temperature drama.. Noooooooooooooooooo. I had escaped that place, I was only an outpatient, a visitor there, a drop in chemo patient, not an overnighter, not in there with the DYING people, not the CANCER DYING PEOPLE. I didn’t have cancer, I wasn’t dying, I was someone who’d been to Mars, got a new expiry. I didn’t need to go there. I had autoimmune problems, immune system anomalies, dysautonomia stuff with my brain and temperature. Maybe inflammatory markers of 38 were normal for me. Maybe it was just chemo drugs in my kind of body together with a cold and a brain that couldn’t regulate. Surely, the oncologist would tell them. In the morning, he’d tell them I’m ok, send me home.

Somewhere in the fever, the inflammation, the trauma of all we’d already been through with chemo and our escape having slid into this abyss of more medicalisation, of course my DID was firing like crazy. Polly (one of my 13 alters) was crying and needed Foosh (well actually Foosh’s representative which is a plush bunny), Esby (another alter) needed a pair of socks to snuggle with and the only pair in the room were those in Chris’ running shoes, on his feet, Willie (another alter) was making plans to negotiate with the doctor to send us home, Marnie (another alter) was saying ‘stuff it, see ya in the morning’ and Da (another alter) was doing the brave teenage soldier, reassuring Chris she’d look after everyone and that Polly would snuggle the blanket and it had a hole in it and that would make rabbit ears anyway. Chris was feeling distressed he’d have to leave me in a hospital, unprepared, no toothbrush, sleepwear, food (my diet is GF/CF/legume free etc) and obviously in PTSD. Then Da said to Chris, ‘but we’re not alone, you know that, there’s 13 of us in here with Donna and you are in our heart, so take us home in your heart and see us in the morning’. Chris burst into tears and left us to go home to bed.

The doctor came and Da soldiered off to the room they gave us down the back of the hospital. In went the IV drugs, the staff came and went taking measurements through the night. The next morning, the doctor came in. He’d talked to the oncologist at ‘the cancer hospital’ and yes, he’d agreed with me, I could go home. I was given a prescription for 2000mg a day of Cephalexin (antibiotics) in case my white cells couldn’t hold back bacterial onslaught (even if it was a virus the body’s bacteria can then multiply too much in someone with compromised immunity) and I was a freed woman! I called Chris and he was in the car, in the rain, on his way in no time. I was so excited, I didn’t wait inside. In my flimsy cotton dress and sandals, I went in the rain to the bus stop in the street and waited for my prince to take me home.

The high temperatures continued through Tuesday, and Wednesday and although they took 2 hours to respond to Paracetemol, they did come down with it for the 6 hours it lasted each time. Finally by Thursday I had the back pain/spasms of Neulasta starting up telling me new reinforcements for my immune system were on the march, coming to help. On Wednesday night Willie said, I think we’re going to be ok now. And by Thursday morning the severe oral thrush finally subsided and my tongue was no longer this arctic snow covered thing.

Chris and I spent Thursday first seeing his specialist to check up on scary liver enzyme levels. Was he heading back to his own hospital chaos of March-June? Would he need another op? Did he have liver damage? I told him I was here for him now, that if he had problems, I could help. His specialist said he’d need another ERCP to possibly stretch the bile duct to help it do its thing better, that this was fairly usual where someone had had bile duct surgery and should eventually normalise. No, he didn’t think it was anything worse, but yes, in December he’d spend a day in hospital again, be sedated and have people go down his throat, through his stomach, into his bowel and check and possibly stretch his bile duct using a small balloon. And, yes, in the future, another 6 months from then, more blood tests for him, perhaps another ERCP, until it all normalised. Guess the good news was he didn’t think Chris had liver damage nor was in any immediate danger.

Next was my appointment at the breast surgeon. Chris came with me, we talked about Ruby (my remaining breast) and how we are certain its time for her to go now. She talked about breast cancer rates, that this was 1 in 9 women and then 1 in 20 of those treated for breast cancer will have it return. So Ruby had at least a 1 in 20 chance of housing breast cancer again. And we knew the start up cells of my cancer were Comedocarcinomas, fast growing, high malignancy, high return rate cells with a 13-38% rate of return. So Ruby posed a 5%-38% of inviting cancer back and so we decided to schedule her departure for February 2012. It would mean no loss of lymph nodes and at least one nice free arm for IVs, blood tests, blood pressure monitoring for the rest of my life.

We then went to lunch, then home and changed the house from chemoville to something new, moving furniture, restyling the place. We booked an anniversary weekend by the coast 4 hours away. We talked and snuggled and cried and shared Vicks and found handkies and ate and slept and took vitamins like Romeo and Juliette with colds. We scrubbed the year planner with all its entries of operations and blood tests and chemo treatments and filled it with new plans for a post treatment life for each of us.

Warmly,

Donna et al.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Life on Mars – (a breast cancer journey with chemotherapy)