I am a disability advocate and work for an agency that not only serves the disability community, but is staffed by people with disabilities. I have several disabilities, one of which is an incontinent ostomy. I do not have control over my bowels, and must wear a colostomy bag to contain my waste. Under Maryland law, ostomy supplies are 100% covered by insurance agencies.

When my employer changed insurance providers on September 1, 1997, I could no longer get the supplies I required to live. I have had my ostomy for three years and this was the first time I had ever had problems. I fought with my insurer for two months before I received any supplies, and at that time the supplies were incomplete. Many of the doctor-prescribed items were denied as unneeded, so I was forced to purchase them myself.

At the time, my salary was $500 a year above the poverty level and I soon found myself in financial trouble as a result. When the few supplies I got at that time ran out, my co-workers and myself went back to battle with my insurer, and it was January before I received more supplies, again not all that I needed.

I was told by my insurer that I was expected to use disposable bags for five days each. Now pardon me for being so graphic, but it's necessary. I work in the public arena, and I was expected to (and this is verbatim) "wash the bags out in the public restrooms that I frequent, walk (I use a wheelchair) to the sink with my ostomy exposed, and finish washing the feces out into the sink, then reattach it to my flange." It would be the same thing as asking a mother to empty a diaper, rinse it out in the sink and reapply it to her baby for five days.

I have systemic lupus, so I also have a compromised immune system. To even ask anyone, let alone a person with immune problems, to use public restrooms in such a fashion, is sheer and absolute insanity.

In mid-April, I finally received a full month supply of ostomy products, but I had been out from work for 2 1/2 months, living in my bathtub, because I had not had the supplies for that long. I even spent a week in a nursing home as a result of this and had another stroke, requiring a hospital stay, because of the stress from this battle.

I am a person who could get the medical benefits I require from Medical Assistance if I were to quit work and go on welfare. The bizarre thing is, I want to work--and I am paying into the system, but cannot get the services I'm entitled to and work so hard for.

I was supposed to have corrective surgery to fix the bilateral spinal implants that "fell out" of their socket and are currently free-floating in my right side. I actually have to push them back inside my body several times a day and night. My insurer has only one doctor they will allow me to see that can do the work on the implants and he is unavailable to see me until the end of May. That is just to see him--I have no idea if he will be able to schedule the surgery then, or if I will have to wait another six months. I cannot stand the discomfort much longer.

I have been told that because of the ERISA loophole my insurer is protected from legal liability for delaying and denying the medical care that I so badly need. I am convinced that if I were able to hold my insurer legally accountable I would be getting more attentive care.

Labels: colostomy, health, health insurance, insurance, medical, USA

 
Chemotherapy: 3rd cycle (2009)

So this is the start of the third cycle of this set of chemotherapy. This time haven't had much of an upswing at the end of the last cycle. Feeling tired. Apart from that, everything went without problems.
Also saw specialist for results of tests and scans. They couldn't find any problems, which is sort of good, though it means we can't pinpoint any cause for my symptoms. Normally they'd do an endoscopic examination to try and see anything that might be there and not shown up, but will wait 'til after chemotherapy. In meantime there's some tablets I can try to see if they make a difference.

I used opportunity of being out to grab bus downtown with assorted medical receipts, including that appointment, to Medicare. Good refund, covered most of the water rates I'd just got. Feeling a little cheered, I caught bus to Daily Planet* Foodcourt and got two bowls of different pho to take home. I can usually get two meals from each. Very nourishing and easy while I expect to feel poorly. Then bus home.

TravelPass is a great blessing for the frail and ill. It lets us get out and do things we wouldn't have the strength to do if we couldn't catch transport for short jumps. I worry the new card system won't be as good — there were nasty hints during previous contretemps about an 'integrated smart card system'.

[Toilet: before setting out; reaching hospital; during chemo; before leaving hospital; reaching Glasshouse (Medicare); GPO/Westin before catching bus; Daily Planet before catching bus. I hope those tablets help.]

* formerly Ernst & Young; might be Pavilion now. It looks like Clark Kent works there, though I don't think it's been used in any of the Superman movies they've filmed here.

Labels: cancer, chemotherapy, medical, quotidian, transport, treatment

[permalink][comment] - posted by Mez @ 10/07/2009 08:24:00 pm

Saturday, September 26, 2009

 
Dust Day (23rd September, 2009) in Sydney; Stroke cont.

I raced up & took some photos from my flats' roof, trying to match some of the views I've taken on clear days, plus a few more that I thought looked good. It did have this strange effect — the feeling that "either there's so much stuff in the air it can't get into my lungs, or there's something missing from what is getting in" on my ventures out
that kept them brief.

Here's the link to my Flickr set of the Dust Day photographs.
www.flickr.com/ photos/ sketchesbymez/ sets/ 72157622437316334

One of the pictures has become quite popular, which is pleasing and terrifying in equal measure. (In this Flickr Gallery by Tom Coates, and two ABC slideshows) I've had trouble with my image editor, so didn't put a watermark on any before I uploaded, which means it doesn't always have attribution (snarl). This has spurred me to getting a dedicated little watermarking program. It's like backing up data; so many people don't really get it working until they've had that first really bad experience.



There are a lot of other pictures and descriptions online. The Terrorgraph had a whole multipage supplement about it the next day.

Adelaide is *seething*, 'cos they've been getting days like this for years and haven't had nearly so much attention <sound of
sulking>, and Melburnians are pulling out their memories of the spectacular cloud that hit them back in February 1983, a week before the Ash Wednesday Fires — see Australian Bureau of Statistics (www.abs.gov.au) on Natural Disasters.

Health Update: Friend's Stroke
He is definitely improving, but until they put in a different tracheotomy setup, still can't talk. He can write, but poorly, and is exercising his working right side. I assume there's some physiotherapy for the leg & arm he can't move voluntarily. They've been able to put him into a sort of super-armchair on wheels (Regency Care Chair) so he can go out into the lounge near the lifts to get a change of scene, look out the windows (the ward ones face blank wall) & have 'private' talks. He still gets frustrated & depressed, understandably; as do I, & his other friends.

History Tour Links
Last weekend, a friend helped me get through an ABC-linked history walking tour. This is the photo album on the 702 ABC Sydney Facebook account (702 ABC Sydney) [open, public, you don't have to sign in or be registered on FaceBook], called Slurry Hills and Razorhurst History Walk; also a note on their blog. Good, but laid me up for 2-3 days — mostly recovering Just In Time for Dust Day, which affected my breathing rather more than I expected. Most of the time not having my full lung capacity isn't that noticeable.

Labels: friends, medical, photos, stroke, Sydney, weather

[permalink][comment] - posted by Mez @ 9/26/2009 10:24:00 am

Sunday, September 20, 2009

 
Another Stroke

The youngest and last of my mother's brothers & sisters died suddenly this week. If my calculations are right, he would have been the same age father was when he died, but it sounds like he was spared the slow, suffering, decline in hospital. Of course his family are devastated. This leaves only one aunt on my father's side alive of my parents' generation.

Not much to add when it comes to either chemotherapy or my friend. The 3-day test for the new specialist was a bit of a trial, physically. I did use part of it to help get in training for today's big expedition — a 2-hour history tour of the crime haunts of Surry Hills and Darlinghurst, specially dealing with the notorious Kate Leigh and Tilly Devine. (Here's a link to some photos of the tour on Facebook, taken by the local ABC person along on it.) Pretty well washed out by chemotherapy and tests, so I was worried if I'd make it through, but with a bit of luck and care, and leaning on another friend, we got through without too much trauma.

Slow progress with friend's stroke. One of our big helpers, a childhood friend of his, was away for a week. I was first knocked about by Uncle's death, then the chemo and other stuff. Next week his partner will have to go back to at least part-time work. She wants to make up time now so she'll have hours up her sleeve when she's needed later during his rehabilitation. He was understandably pretty down at heart.

But I'm told they were able to take him out in the chair to the 'lounge area'. At least you can look out the windows (ward windows look out on a blank wall) and get away from 24-hour presence of the other patients.

Plodding on. More slow steps for us both.

Labels: cancer, chemotherapy, family, friends, medical, mourning, stroke, treatment

[permalink][comment] - posted by Mez @ 9/20/2009 10:32:00 pm

Friday, September 11, 2009

 
Rolling on in Earth's diurnal course: Chemotherapy; Friend's stroke

Health Update:
My chemotherapy continues; unpleasant but not very horrible, so far surviving. Around the peak of immune suppression was keeping kitchen and bathroom stuff and hands rather neurotically clean, away from crowds and other people. Using drugs to suppress some of nausea, diarrhoea — able to go to opera (Graeme Murphy production of Aida) — but very tired. Drinking lots of fluids (soup + water, juices, milk), as recommended to counteract effect of cytotoxin on kidneys means I have to keep back & forwarding to toilet a lot.

Friend with stroke, 4 weeks on is conscious! He has fair movement and strength on one side, very little on the other. Still tracheostomy and nasogastric feeding, because his swallowing isn't good, but breathing by himself (yay!). Is doing exercises, or at least practising movements of his limbs, head and throat. He seems frustrated at being unable to speak & tiring easily. Both understandable.
I feel helpless & inadequate. Am hoping to be

a) healthier later;

b) able to help with further rehabilitation.

Labels: cancer, chemotherapy, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 9/11/2009 09:13:00 pm

Saturday, August 29, 2009

 
Friend's Stroke: fortnight report

Two weeks on, he's half-opened one, then both, eyes, and shown some more responses. Still has a nasogastric feed tube, lots less IV stuff though. Breathing 'spontaeously', if through tubes into a tracheostomy, means they will soon move him out of Intensive Care so the machines he's not needing can be used by someone in direr need.

So, progress! Small and slow, but some. We push for more.
Thanks for all and any who've wished him well.

For my birrhday we took in some cake & other goodies, had a couple of bits ourselves, then sliced up the rest and scattered it around for the nurses and relatives in the Unit. Felt good to share; they've a hard job.

Labels: anniversaries, friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/29/2009 11:30:00 pm

Tuesday, August 25, 2009

 
Metastasis: Chemotherapy 2009, first cycle

First Carboplatin treatment this morning. Tired beforehand, so I slept through some of the infusion, though the form-filling kept me awake more than I wanted.

After it finished, I went up to the Intensive Care Unit to see if I could visit A in the half hour before they close to visitors 1 - 3 pm, but they were busy with him. It may have been doing or preparing for his tracheotomy.

Most times I've found it takes some while for the unpleasant effects of the cytotoxic drug(s) to start being felt — it might also be the drugs they give you at the time — so I used the energy and being out already to get supplies, put money in bank, etc. Weather nice, so I planned to take my book and maybe some drink or food and sit with the cats, but time and energy ran out. Slept, then went to visit A in the evening.

Labels: cancer, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 8/25/2009 09:09:00 pm

Monday, August 24, 2009

 
Friend's Stroke: waiting, hoping, fearing

Eight or nine days now since friend A. had cerebral haemmorrhage (on right, don't know details). Aneurism evacuated, tube now on left to relieve pressure by draining fluid. He's some spontaneous breathing & body movements, but no eye reaction yet. They're balancing morphia and hypertension. We talk and touch and massage him, but I just don't know what the odds are.

He's only in his mid-forties and so much potential still for him to achieve more excellent things. And I'm just re-starting chemo, so desperately hoping I'll be well enough to spend the hours with him I am now.

I'm so afraid we'll be making some kind of “end-of-life” decision about him (please let it not be, please no, please).

So asking for some good vibrations thisaway, if you have ones to spare. I'll be in and out, depending on sleep and other obligations.

Labels: friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/24/2009 01:36:00 am

Tuesday, August 18, 2009

 
Friend's Stroke: shock, horror, confusion

A very good friend is ill. For years he's known of and been treated for idiopathic hypertension. Seems to run in the family. Sometimes crazily high BP; rather drug-resistant, despite a good diet and definitely not being overweight. So over time many, many tests looking for causes, trying different drugs. It looked under control with diet, exercise, drugs. All either free, or at least affordable, with Australian Medicare and PBS (Pharmaceutical Benefit Scheme). Dentistry a different story.

He's been nagging me to get off my tail and go off to enjoy myself because of my probable future bouts of cancer, and was angry that I hadn't managed anything during the recently-ended remission. So I did head off for a weekend to Canberra (details posted separately), got off the train on Monday afternoon and found his partner, another friend, waiting on Central Station Concourse.

On the weekend a blood vessel burst in his head. Ambulance straight to our local, excellent, hospital. Tests, scans, operation, ICU, 'nother operation adding 'nother head-tube, ICU, re-scans; 2 visitors at a time. He's still unconscious/under sedation. The medistaff are helpful, kind and fairly communicative. I'm trying to give whatever practical support his partner may need (food, laundry, music he or she might like, books for waiting time, ** any aid suggestions welcome **) and taking spells at bedside.

It's fearful and deeply saddening to see him half-head-shaved, tangled in an ugly reticulation of lines and arcane wires and tape and tubes. Fearful for his easy physicality and fierce intelligence; fearful remembering despair and depression that came with my own pain, weakness and struggles with disabilities in my own illnesses. But, thank Whitlam & Co., all Labor governments, and continuing general Australian public opinion, we don't fear financial disaster too, nor being thrown out/unplugged for non-payment. Thinking of that because I'd been following & commenting a little in the debate in the USA on the problems in their health care, particularly the insurance & payment arrangements.

Labels: friends, medical, stroke, travel

[permalink][comment] - posted by Mez @ 8/18/2009 03:51:00 pm

Thursday, May 28, 2009

 
Hand-Foot Syndrome – cont. Another side-effect

Cancer drug erases fingerprints
Travel warning with capecitabine (Annals of Oncology: Vol 20, No 7, p. 1281)

A patient who took a drug for cancer lost his fingerprints, which caused him to be detained for hours when he tried to visit the United States, according to an unusual case reported on Wednesday. The patient was unaware the treatment had wiped out his fingerprints.
The 62-year-old patient had been taking capecitabine, a follow-up drug for chemotherapy for cancer of the head and neck, Singaporean specialist Eng-Huat Tan and colleagues recounted in a letter to the British journal Annals of Oncology.

Capecitabine's side effects include inflammation of the palms and soles of the feet. The skin can peel, bleed and develop ulcers, and with time can cause fingerprints to be eradicated, Dr Tan said. … "He was detained at the airport customs for four hours because immigration officers could not detect his fingerprints." … Mr S. was eventually allowed to enter… He was advised to travel with a letter from his cancer doctor to explain his fingerprint-free condition.
The report urged patients who are put on long-term courses of capecitabine to be aware of the unusual risk. [AFP]

News Links:
Travel warning with capecitabine (Annals of Oncology: Vol 20, No 7, p. 1281)
Cancer drug wiped patient's fingerprints (Aust ABC News)
Drug erases fingerprints, causing immigration drama (SMH)
Cancer drug capecitabine causes patient to lose fingerprints and be detained by U.S. immigration
(The Medical News)
Cancer Drug Causes Patient To Lose Fingerprints And Be Detained By US Immigration (Science Daily)
Side Effect of Drug Capecitabine Is Fingerprint Loss (CancerQuest)
Cancer patient lacking fingerprints held by US customs (The Family GP)
Cancer drug causes patient to lose fingerprints and be detained by US immigration (e! Science News)
Cancer drug erases fingerprints (BBC News)

Labels: cancer, chemotherapy, medical, travel

[permalink][comment] - posted by Mez @ 5/28/2009 06:42:00 am

Friday, September 05, 2008

 
I'm Ba-ack

Spent a month in the hospice attached to the hospital, getting to walk and use my hands again. Among other things, this meant no internet connection. Even when I got back to the flat, due to a stuff-up with assorted phone companies, my home phone had been disconnected. It took quite a bit of work to get it reconnected.

Took some photos, including ones of the Ward Cats. May try and fill in some details of my stay as I have time and energy.

Flickr Photo Set: Hospice, August 2008

Labels: medical, pix, quotidian

[permalink][comment] - posted by Mez @ 9/05/2008 01:03:00 pm

Wednesday, July 23, 2008

 
Aarrgh

Not good news. I went downhill physically quite a bit last week. By the end of the week I virtually couldn't walk.

Because of the raw tender skin flaking & peeling on my feet (as well as hands), these horrible 2"–3" blisters have spread over the sole of my right foot. I've borrowed a walking frame from the hospital so I can hobble to the bathroom & kitchen, but it can take minutes to get the 20-odd feet, and is exhausting. Crawling is useful, faster, but can be wearing. Home help people & friends have been bringing food & supplies, taking laundry upstairs & retrieving it, preparing some dishes so I can just hobble over, grab, maybe heat them, & eat to keep up my strength. The doctor moved my tests to next week; I'll still need to be picked up, dropped back & wheelchaired thru the hospital but *hope* to be able to get down & up the 57 steps home somehow, possibly.

Have 'funny' story about friends & me & WYD. Will tell later when hands better. Do have this map from our driver outlining our second, more successful attempt to get me home.

Labels: medical, quotidian, wyd

[permalink][comment] - posted by Mez @ 7/23/2008 11:01:00 pm

Thursday, July 17, 2008

 
Urgh

Haven't been able to do much of anything at all in the last week. Really badly affected. I've tried to at least get up & out of the flat — up on the roof is only 2 flights of steps, not 6 down to the ground — but just a walk down, across the road & 30-50 metres along to shop for milk/bread/etc, then back will leave me exhausted, sleeping for a couple of hours & with nasty pains in my feet. I'm trying to type mostly with my fingernails rather than fingertips, but anything one does with one's fingers normally — doing buttons or zips, handling cutlery, dialing a phone, using keys, etc, etc — hurts.

I'm hoping lots of rest, good food, vitamins, etc, will help. Think the World Youth Day 'pilgrims' will be walking past me on Saturday & Sunday, am considering whether to sit/stand on my front steps singing either or both versions of Boom de Yada (aka Boom De Ah Dah), & maybe Vatican Rag, or just wearing my Central Location T-shirt.

Labels: medical, quotidian, wyd

[permalink][comment] - posted by Mez @ 7/17/2008 01:56:00 pm

Sunday, July 13, 2008

 
Bleh

I'm in the third cycle of the Xeloda treatment — the one they changed to when the tests showed the first treatment protocol they tried wasn't working. Next week, at the end of this cycle they'll do another round of tests to see if this one has been doing better. I've been mostly able to control the nausea/diarrhoea, and it's nice to be getting hair back (except for the hair that's less popular, like the sub-prime moustache & beard).

The Hand-Foot Syndrome, though, makes life quite difficult and painful. Walking becomes not just tiring, but actually hurts — I'm reminded of the Little Mermaid — and doing all those little necessary, almost unnoticed stuff, like un/doing buttons or zips, turning keys, opening screw and non-screw lids of all kinds, using cutlery, even just writing, hurts and is awkward. White cotton gloves help somewhat, and being winter I can wear other gloves outside without looking too weird, which helps 'explain' my difficulty with getting coins out or picking up change.

What worries me is that if this is holding the cancer from expanding, but not shrinking it back, this drug is one they can keep you on long-term. I would hate to have to keep dealing with these symptoms for many months, or even some years. OTOH, it could be worse. We will see what we will see. Am hoping, unlike before, that cancer isn't advancing. At any time getting up the 57 steps can be a real chore, but it's worrying how just in the last week, following Don Giovanni, almost any walking has been exhausting & very painful.

Again, I'm so glad for the Australian medical system. These tablets are $700 a packet (about a cycle's worth), but I'm paying ~$30. I got a statement from MBF showing the thousands they've paid out in the last year (admittedly having paid them w/o claiming for decades). Plus there's the weekly home help. Recently Thomas M Disch, the American writer, poet & critic, committed suicide partly because he'd been bankrupted by the terminal illness of his partner and was being hounded out of his rent-controlled flat (also discussed at nielsenhayden.com/ makinglight/ archives/ 010413.html as well as elsewhere on teh Intartubes).

I've been continuing work at home, and got an injection of new leave to juggle at the anniversary.. I went in on the afternoon of my anniversary, after my earlier doctor's appointment, but was feeling quite sick, so I didn't go around to see different people. Luckily they didn't have anything arranged.

Am coping with the new flat, tho' it still has problems. I need to keep at the Strata Management people to get the leaking roof fixed, for instance. There's still things packed up in boxes, maybe 'cos I'm thingy about having to do it to move out, possibly in September when the lease expires. We've had a few problems with the flat nearby being renovated with sledgehammers and small jackhammers. Especially when they left the door open and cement dust got everywhere.

Labels: home, medical, quotidian, society

[permalink][comment] - posted by Mez @ 7/13/2008 08:48:00 pm

Monday, June 02, 2008

 
Xeloda (Capecitabine) - Side Effects of Chemotherapy

Xeloda and Capecitabine - Side Effects of Xeloda - Chemotherapy Drugs: "Xeloda �
Generic Name:�Capecitabine"
www.chemocare.com/ bio/ xeloda.asp

Hand-Foot Syndrome

Xeloda (Capecitabine) cancer treatment, side-effect: Hand-foot syndrome (Palmar-plantar erythrodysesthesia or PPE) Skin rash, swelling, redness, pain and/or peeling of the skin on the palms of hands and soles of feet.
(see also www.chemocare.com/ bio/ xeloda.asp)

A mild version, the reddness doesn't show up very well. On the hands it is on the last joint of the fingers and thumb, with another patch where the thumb joins the palm. On the feet, it's on the bottom of toes and mostly the ball and non-arch middle section of the soles. Skin is peeling on some of the left (lymphodeomic) hand, the balls of both feet and some toes.

Xeloda belongs to the category of chemotherapy drugs called antimetabolites, subcategory "Pyrimidine antagonist". It is prescribed to treat Metastatic breast, colon or rectal cancer.

Labels: health, medical, medicine, pix

[permalink][comment] - posted by Mez @ 6/02/2008 01:16:00 pm

Saturday, March 08, 2008

 
Yet more trouble

Went into yet another tailspin on Wednesday when, after sending back some work by email, my boss sent me her calculations on how much leave I had. It worked out that there were about 3 weeks left before I went onto leave without pay, unless I worked some extra days, either at home or going in.

I thought this meant that I couldn't afford to rent, and would have to move back to my own place, still in need of repairs and with much other difficulties, including having a 'transfer of care', with all my non-direct medical and social care (everything but chemotherapy) coming through a different health area — probably Royal Prince Alfred Hospital. After a while, and some talking with a number of people, I think with some juggling I can manage to still rent during my (indefinitely-timed) treatment, keeping me close to St Vincent's Hospital, and get repairs done to my house during that time, so I can move back there afterwards. We will see. It may be too close to the wind for me.

Medical: Blood tests from last week weren't good enough to have second dose of chemotherapy, so it was postponed to this Friday (7th March). When I went in for blood tests and to talk to the social worker, etc, I found that the appointment hadn't been moved, so the drugs weren't ordered, etc, and they had to move my next chemotherapy date to Monday 10th March. Lord knows what will happen to my chemotherapy dates around Easter, steaming up behind us quite quickly.

Labels: health, housing, medical

[permalink][comment] - posted by Mez @ 3/08/2008 08:18:00 pm

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This is my blogchalk:
Australia, New South Wales, Sydney, English, photography, reading, natural history, land use, town planning, sustainability.