First, I want to apologise for the abrupt departure - I felt I didn't have a choice.
Second, my new rules prohibit me from wasting time, so I will not be going over everything looking for typos - my neck and back are not up to it.
So, as any of you who have known me for a while are aware, I tend to overshare.
It was my intention to post something much sooner, however there have been many inconsistencies and I didn't want to provide incorrect information.
Back in march this year my usual disc prolapse low back pain was getting bad and also affecting my hip, and then it became intolerable. Now not only could I barely stand, but I couldn't sit either.
Being the (sometimes) good doctor that I am I went to my GP, to confirm that I needed an xray and a CT, which I did on 26th march at the local x-ray practice. That evening my GP called to say that they had found several metastases in my spine and pelvis, in addition to the disc prolapses and moderate arthritis in my hips. Obviously this was quite a shock, as I wasn't aware I had a primary cancer.
I spent the next 3 days in the x-ray practice having CTs of my chest and pelvis and ultrasound of my breasts, basically just praying it wasn't lung cancer. As you know despite quitting numerous times I am an addicted smoker, and no-one gets less empathy than a smoker with lung cancer.
When the chest CT came back clear, I was so relieved it was almost like I was OK.
The breast Ultrasound was clear, the abdominal CT was clear, and I couldn't get a mammogram for a week. The radiologist managed to get me an urgent appointment at their other practice the next day - I think he felt (rightly) bad. In October 2013 I fractured my rib making the bed - this might seem alarming , but my immune condition also has associated skeletal problems including minimal trauma fractures. However, when it wasn't settling I had an xray - on my birthday which was Melbourne cup day, as nobody ever wants to book in to see me on Melbourne cup day, and I thought xray might be similar. I specifically asked him if the 7th rib fracture found could be a pathological fracture (a fracture through a bone weakened by metastasis) and he said no.
Anyway, the mammogram didn't show anything, so then I'm think it must be a melanoma ( I don't have anything resembling a melanoma, but they can be in the back of the eye or other hidden locations). Then they did another ultrasound with close up views which found a lesion deep in the left breast, and then another mammogram which showed the unmistakable irregular and spiculated lesion.
It was very deep, and even after they found it I couldn't feel it. The doctor asked if I wanted to have the biopsy done immediately, which I did. I didn't even realise it was a core biopsy, having heard how painful they were and this was nothing so I assumed it was a fine needle biopsy.
I had already tried to book in with a breast surgeon - I rang for 3 days and nobody answered the phone on Thursday, Friday or Monday. They eventually rang me back on Tuesday - apparently the receptionist had been on holidays, which seems pretty pathetic. In the meantime I booked with another female breast surgeon, which turned out to be my biggest mistake. I think that was the worst consultation I have ever had, and having seen many orthopaedic surgeons over the years didn't think it could get worse. My sister came with me, which was fortunate as I might have otherwise thought it didn't happen. Don't want to elaborate, but I then had to find another breast surgeon. My sister and I actually had a giggle at the report, which stated the lesion was 13cms deep to the nipple. We didn't realise my boobs were so huge! (especially having shrunk with menopause) Of course this is when squished, but still quite bizarre. Definitely explains why it couldn't be felt.
She did send me to an female oncologist I liked, except when my ankle swelled up like an orange where the pin and plate had been happily in situ for 15 years. Although she did order an xray which showed moderately severe soft tissue swelling over the pin and plate extending up my leg, she didn't seem to think this was odd or required explanation. All good now though.
At this stage I assumed I would need a lumpectomy and semi urgent radiotherapy to my back, as I was getting signs of spinal cord compression ( I think - I had some weird paraesthesia in my legs which was presumed post polio, but nobody except me seemed to be bothered trying to find out)
Obviously breast cancer was the most likely - my sister, who has a much healthier lifestyle and less risk factors than me, was diagnosed at 50, and a second cousin died at 38 (and her aunt, her father's twin sister, died in her 50's) and my father had prostate cancer.
In addition, I have a genetic immune disorder which not only causes my severe allergies, but also leaves me susceptible to infections and cancer.
So, really it was just a matter of time, but it didn't cross my mind that it would present with metastases. Yes , I had my screening mammograms from age 50 (and copious ultrasounds prior due to very dense breasts and copious cysts - another risk factor) and was due that week.
Since working in a hospital in 1986 I had never seen a woman with metastatic breast cancer.
I had seen elderly men with metastatic prostate cancer during my GP days, and they looked like they had metastatic cancer. I didn't. Due to my increasing immobility I was into the obese BMD range; my nails were over a centimetre, my hair that never grew was at my waist. It seemed very strange. I didn't fit my image of someone with metastatic cancer.
Since working with primarily perimenopausal and menopausal women for 10 years I had only seen 1 woman with breast cancer (who had immune issues somewhat like mine), and 2 weeks before I left someone with a history a copious cysts like me (who only got checked because I insisted she did, even though the lump didn't feel especially concerning) This is in contrast to my GP days when I would see or diagnose a woman every 6 months.
Like 80% of women with breast cancer I had had unusual amounts of stress in the previous 2 years.
Apart from the pain and increasing post polio disability, which I could take no painkillers for, having been told by both the dermatologist and the allergist that they caused the severe allergy ( I thought they were wrong but couldn't risk it. They were), my father had been very unwell, and I was in the impossible position of trying to stop the doctors from killing him while respecting his request not to interfere. (he has pretty much recovered and recently turned 88, and advised me he is not going to die)
The ex-boss from Newtown (not Sandra), with whom we moved to Rosebery, stopped paying everyone in 2012, and then went bankrupt with hundreds of creditors. Even Fair Trade could not help the reception staff. Having 20 % of your salary stolen when you only work 2 days and just get by is a problem. He actually looked me in the eye twice and promised I would get the backpay that evening.
And then a $1500 parcel "disappeared" from the Post Office while awaiting collection, and after a 3 month investigation they concluded proper procedure had not been followed and they could not account for it's whereabouts, but basically tough shit. This pushed me to the limit financially.
I actually forgot perhaps the last straw. The people upstairs were to do a 6 week renovation, and laid thick plastic over the stairs. This is difficult enough to negotiate for a normal person, but try doing it with the equivalent of a severely sprained ankle, mild stroke, slowly recovering knee replacement, fractured rib and spinal fractures ( so I couldn't even drag myself along using the handrail) After 4 months, when work had stopped for 3 weeks over Xmas, I rang the contractor to request the plastic be removed - in addition to me, my elderly neighbour also had a spinal fracture and the neighbour across the hall was heavily pregnant. He verbally abused me regarding the Body Corporate taking too long to approve the removal of a structural wall - I'm not even on the body corporate.
After 6 months I stopped going anywhere except work, as my knee was stuffed from the difficulty of the movements required in trying to not fall down the stairs. The most frustrating part was they would wake me at 7.30 with drilling every day, then leave an hour later. After 8 1/2 months I rang the owner after 3 days of constant jackhammering of tiles, and was advised they were now finished except for hanging 4 doors.
Obviously I am not a tradesman as I didn't realise hanging doors entailed a further week of drilling and hammering, so loud that when I went up and knocked on the door as loudly as I could (injuring my hand in the process) they couldn't hear me.
Finally they finished after 9 months (yes, like gestation), but then every time the hot water was turned on I had water running down my dining room wall, just where I had stacked some prints I was planning to sell.
I should have just fallen down the stairs and sued them, but to me that would entail bad karma.
OK. Now if I was reading this my first question would be did the bioidentical hormones cause this?
I honestly don't believe so, in fact I think if anything they delayed it, but there is no way of being certain.
I started researching the progesterone when my sister developed significant oestrogen dominance issues before age 40. When I developed fibroids at around 40 I was determined not to have a hysterectomy - and I didn't. My fibroids shrank during perimenopause, a time when they usually go ballistic. I believe they were protecting my breasts as well, and I was using a very small amount of primarily E3, the least stimulating oestrogen.
During perimenopause I measured my oestrogen one day when my boobs felt like they were going to explode, and the reading was 3201 - the highest reading I had ever seen - the normal range for the preovulatory peak is 600-2500, but I had never seen a reading over 2000. I believe I was very oestrogen dominant from the time I started menstruating at 11.
Strangely, after 15 months without menstruating - thinking I had finally made it to menopause after getting just past the year twice already, 2 weeks before the pain got really bad I had signs of ovulation (at 53!) and sure enough, 14 days later I had a period. That's why I delayed the mammogram for 2 weeks, as I knew my boobs would be way too sore.
As it was, despite having very little oestrogen for nearly 5 years, my mammogram showed "both breasts are very dense with greater than 75% fibroglandular density"
So that was a pretty full on week - I told Peta, my receptionist to cancel the Saturday and Tuesday appointments. By the next week I was pretty much off my face on painkillers - between the pain and the painkillers and being somewhat in shock, I really couldn't concentrate, and didn't think it was appropriate to be consulting with patients, so on Monday I asked Peta to refer everyone to Dr Cabot or Dr Tendek, who had worked with us at Broadway. I wasn't sure if I would be going back to work, but certainly couldn't see going back for months, and it would be unfair to leave people in limbo
I have often joked that unless I was dead I would go to work, and I had pretty much lived up to that - I had worked with bronchitis and pneumonia, a severe allergic reaction (erythema multiforme, while recovering from knee replacement) in a wheelchair and on a walking frame, crutches and walking stick; with a fractured rib and 2 spinal fractures (which made just taking a blood pressure reading excruciating), but this was too much.
I had yet to have a blood test and was very concerned that my calcium would be off the chart, but it wasn't. All my tumour markers were normal (which is unusual but not unheard of); more strange was my normal alkaline phosphatase, which should have been off the chart also with multiple metastases.
I started doing some research and came up with several studies showing osteomyelitis could mimic metastases, especially in breast cancer. I remembered having had a fever for 2 weeks before the pain, and having totally different night sweats - at the time I thought "I wonder if this is what malaria feels like?". Only the radiologists put any stock in this theory, and 2 lots of bone scans and CTs they say are definitely metastases. But when pressed. admit without a biopsy you can't be 100% sure.
Problem was all the lesions were either adjacent to the spinal cord or the heart (they found one in the sternum on the breast MRI, which I didn't want and they didn't advise I would get no rebate from the $700 - strangely if you don't have breast cancer, you do get a rebate)
At this point I realised I was the only one actually thinking - I needed to see me, but obviously I couldn't be objective, and my thinking was a bit clouded (although still seemingly better than most of the specialists I was seeing)
So, I contacted my ex boss, Dr Sue. I describe Sue (with permission) as me on steroids - very good diagnostician, and will do whatever it takes to get a patient what they need, but stay away when in a bad mood. Sue advised me of a blood test for osteomyelitis - procalcitonin. As I have not done general practice for over 10 years there are some things I am not up to date with. This came back negative, but is only positive 60% of the time. She also got me an urgent appointment with a new breast surgeon. Unfortunately she no longer worked at Macquarie, and I had to go to Bella Vista.
Apart from the distance, I'm glad someone drove me because I really might have thought I had hallucinated her. In the starkest contrast, this doctor had an energy that I have never encountered before, but would have to describe as like an angel. Her manner was so welcoming, and she seemed to exude some sort of peaceful calm. All I could think was what a waste being a surgeon - she would be so perfect as an oncologist. Both my brother who drove me the first time, and my friend the second time could sense her "spirit" across the room, although they did not come in with me.
However, she agreed there was no reason to do a lymph node biopsy or lumpectomy, but listened to my theory and requested her radiologists repeat all the scans looking for any evidence for osteomyelitis. Again they ruled it out, while agreeing a biopsy was the only definitive test.
The other confusing thing was that several metastases, notably one in my right shoulder that I couldn't feel, and in my left hip, did not show up on subsequent xray.
Again no one thought this was strange or required further consideration.
So, I decided to take it as a good thing that I was not going to be mutilated, and I could keep taking my herbs (which I would have had to stop for radiotherapy). I had done a lot of research when I was studying herbal medicine, and one text was extraordinary - written in 2001by John Boik as a thesis, this 500+ page book had all the mechanisms for herbal constituents on cancer cell growth and death (apoptosis) Whenever I am told there is no evidence for herbal medicine, I direct people (or doctors) to this book. I gave a copy to my oncologist and the radiotherapist. In 2004 it cost $90 for the softback, but is available as a download for $25US on the honour system. This is a very scientific book and you need science (probably biochemistry) knowledge to read it but is an awesome book. Please don't abuse the honour system if you do want to read it. It's titled Natural Compounds in Cancer Therapy.
There are some especially useful tables showing synergistic effects of the active consituents, and I based my herbal regime mainly on this. Most anti oxidant herbs have anti cancer and , of course, anti inflammatory effects - helpful as the anti hormone therapy (letrizole) causes major exacerbation of the arthritis.
I also re read the book by Professor Jane Plant - your life in your hands - and went off dairy.
For most people this would not be too problematic, but being allergic to all seafood and eggs, I used cheese as my major protein source.
So after 12 weeks the oncologists suddenly decides I should see a radiotherapist. On the way there a truck runs up my arse when I give way to a police car with flashing lights at a major intersection.
At least he stops - ironically, his truck says Traffic Management Australia.
Anyway, the radiologist won't touch me till a spinal surgeon says my spine is not going to disintegrate, which would mean instant paralysis. Neither he no I can get me an appointment within a month, but Sue gets me in on Monday (this is Friday), then turns up at the appointment to support me.
Sue will tell you I saved her life when she had a serious autoimmune disorder. This is an exaggeration, although I did help to diagnose the disorder that the specialists were clueless about.
Sue and I like to bitch about crappy specialists. Sue is extraordinary, and I would trust her above any emergency physician in an emergency, and she also teaches head and neck anatomy to dentistry students.[ correction - teaches acupuncture to doctors and dentists, requiring in depth anatomy knowledge]. I can't thank her enough - I think I would have totally lost the plot without her input.
But also my friends and family were awesome when I couldn't drive.
My first panic was I had no will, and needed to do one in case I developed brain metastases. No way I was going to let the government steal my unit - I worked bloody long and hard to keep it.
I found a great local GP and a fabulous physio who does acupuncture -will not touch my spine.
I also have several disc prolapses in my neck, and my hands have been going numb then the burning pain, waking me up and lasting well over an hour. Hopefully , not dragging 20 kilos of scans around will help a bit. And I got a new Tempur symphony pillow - this "cured" the same issue 15 years ago.
I also emailed Sandra (Cabot) and she told me they had a Hyperbaric Oxygen therapy tank at Camden. Some research showed this to be quite promising in animal studies for solid tumours (especially breast ) and metastases. The thought of getting to Camden wasn't appealing, but then she advised a new tank was opening in Leichhardt the next week. Leichhardt is 5 kilometres. so I took that as a sign, and had my first session yesterday - fortunately a short one as it was so boring and I hadn't thought of taking music. I have now had 5 sessions, and feel I can recommend this clinic - The Cosmic Tree at 314 Norton St Leichhardt (the quiet end near City West Link) They are very attentive and I felt safe and secure. I was quite astonished when the oncologist seemed to think it was a good thing to try - I was prepared to be talked out of going ahead.
Also amongst all of this I was very pleased the Hay House World ( Internet) Summit was on in june.
Really interesting stuff, and lots of people who were told they were going to die, or who had actually died, and now go around speaking at health summits. Really cutting edge stuff about epigenetics and how you can switch off genes with your mind. Unfortunately my upgrading my internet in preparation was a disaster as it took a week, and I missed most of it, but fortunately they did a 36 hour re run. Of course you could buy the entire summit for $400, but that would be information overload.
I also saw a medical intuitive. I had been told about a doctor in Bondi Junction years ago, but had not gotten around to it (of course) In googling her, I found someone else, called Rachelle. I took this as a sign ( although after nearly 50 years with barely a Rachelle in sight there seems to be one every time I turn on the TV now). I had no idea what to expect, but basically she reads auras and did some chakra cleansing. She was lovely, and her Art Deco bathroom had exactly the same tiles as my previous Art Deco bathroom.
So, my MRI last Monday showed that several of my metastases have disappeared. I could feel a change last week, after being up for 3 hours and realising I hadn't taken any oxycontin or endone.
Obviously it is my plan to cure my cancer, and if successful may start curing others.
I will be writing my autobiography - it will probably have more about music and seeing bands than about being a doctor. I'm about 3/4 way through.
I wanted to get something to thank Dr Sue, and when I saw these in an auction catalogue I knew they were perfect. I visualised taking them to her all week, and was very happy to acquire them for much less than I was willing to pay.
Ok. That's my story. It's all true. The ending is yet to be written.
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