Pheology

  
 
 

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My new medicalized life:

Throughout 2005, starting with intense headaches, I increasingly experienced a strange set of symptoms that was eventually diagnosed as a pheochromocytoma (means dusky coloured when stained with chromium salts) in January of 2006. Since the cancer is not in the adrenal gland they are being referred to as functioning paraganglioma. I previously had a begnign paraganglioma removed - this time it is malignant and has metastisized, leaving me with a couple of abdominal lesions and a bunch of tumours on different bones.

I'm now receiving appropriate medication which has reduced the very unpleasant symptoms and I'm being well looked after by close friends, so feel supported as I wend my way through the treatment process. I've had radiotherapy on my lumbar and cervical spine, right hip and upper right arm. I've also taken a series of eight trips to Edmonton for MIBG treatment with Iodine131. I'll try and post regular updates so you can check in on what is happening. If I haven't posted anything for a while it is most likely a reflection of my lazyness and not wanting to bore you. If anything important transpires - I'll let you know. Cheers, Peter

Replies to posts

Please bear with me as I try to get this blog to work like most normal blogs. I'm aiming for a setup that allows only me or other specified  friends to post new articles (which are also sent to the email address of subscribers).

Anyone would then be able to reply to the post or to other replies, increasing your ability to directly comment and communicate with others who know me (but these replies would only be available on the website and would not be sent to subscribers).

But, there are a few teething problems.. thanks for your patience, Peter

Medicalized Life

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PETER JOHN ROYCE - April 5, 1953 to November 4, 2009
- 11/11/2009
Beloved son of Pam and Tony Royce of West Mersea, England, brother to David (Jane), Ian and John (Karen), and caring uncle to his many nieces and nephews, and Tom and Clara. He will be greatly missed by many, including his partner Suzanne Vetterli, and his loving friends, Megan Ellis, Jane Williams and Lorraine Chisholm.

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Conserve
- 10/5/2009
I've long pondered over whether it's best to just push myself physically, to squeeze the utmost out of the life I have left, or to be careful, to husband my resources, and be very careful not to over extend myself. My tendency has always been for the former, a part of my personality it would seem. However, I have just been convinced that the latter strategy may be better to stay alive, at least in my current working order, for longer..

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overdue update...
- 9/19/2009
Much too long since I wrote an update, but I'm still alive, even kicking a bit. While my general health condition may be deteriorating (slowly at this time), my management of the symptoms continues to improve, allowing me to maintain my quality of life - and even find small improvements in places. My appetite has improved enormously...

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Bronchioscopy and lungs
- 7/3/2009
I had a bronchioscopy last Friday and had a surprisingly positive experience with the pain levels I experienced. They seemingly flushed mt lungs and had a scrape to determine what was going on beyond that visible from the CT scan.

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Exhausted, but enjoying my social visits
- 6/20/2009
Things are not looking good for my cycling future. Until now, I'd been able to get to the cancer agency or local hospitals and amenities. Thursday, I again set off to get blood pulled at VGH the nearby big hospital. I could barely get there and had to sit on the curb and recover for ten minutes before going in for my tests.

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Getting away is good!
- 6/2/2009
On the bright side: some wonderful days on Salt Spring Island the weekend before last, just one fever in the past two weeks and while my counts are not great, they do seem to be holding their own a bit more. However, I'd been having a pretty hard time recently: the pain is unremitting and has to be managed constantly, the idea of Leukemia is not attractive, and my appetite and energy levels are close to floor level.

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Another late night hospital visit
- 5/16/2009
I'm laying on my sofa, comfortable, but a bit sickly-sweaty, pain well managed, but fearful of moving. I really only need to go and get a subscription for Cipro (antibiotic) filled and to pick up my washed and dried laundry, but I'm hesitant..

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Platelets and pain
- 5/14/2009
I'm still trying to get my new pain sets under control. It's mainly in my knees and limb joints and fortunately does respond to pain killers. I visited my pain management specialist yesterday and she was very helpful towards getting some of this mess sorted out.

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Sunitinib reprieve extended
- 5/5/2009
I should have been back on the Sunitinib (targeted chemo) by now but was first given a two week reprieve because of my poor blood count levels. My visit with my medical oncologist today extended the break.. my platelet counts are just not up to the job.

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Roller coaster
- 4/10/2009
My blood counts dropped again last night - apparently it happened along with a mild fever I was monitoring closely. This came out of the blue after a great weekend away and an easy going day. The timing does however coincide very closely with the point in my previous Sunitinib treatment cycle that I spent on the Cancer Agency ward with recurring fevers.

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Last day of Sunitinib.. for now
- 4/1/2009
Today is the final day of my current four week Sunitinib cycle. I now get two weeks to rest and recover from the drug before starting the next cycle.

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Sunitinib. Round 2, Day 12 of 28.
- 3/15/2009
Ask me on Friday, and I would have said that everything was under control. Manageable side effects of fatigue, dry mouth and night sweats. Then I ended up back in hospital the night before last with a fever... fortunately I'm out again now and not feeling too bad.. considering.

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Home again and really appreciating it!
- 3/7/2009
It still seems hard to believe that I'm home and able to get around my apartment and do many of the things it takes to actually live a life. It's not just me either, friends who've visited are impressed, and greatly relieved, at the steady improvements I've shown over the past week and even my medical oncologist seemed a little astonished with my recovery, occasionally using such words as "fantastic!" and the like. I know I said it last time but, phew! what a couple of weeks!

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Phew! finally feeling much better.
- 3/1/2009
After being in hospital for a week, I'm now well enough to eat, sit up, walk a little and use my laptop, despite an IV in each arm.

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Peter in hospital
By peter --> - 2/27/2009
Peter went into hospital with a high fever on Sunday. He had a few uncomfortable days but by Thursday, he had recovered enough to laugh, joke, quiz the doctors and give me, Jane, the complex instructions on how to post to this blog.

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Reclined life
- 2/19/2009
Just returned from another overnighter in Vancouver General Hospital. That was for suspected internal bleeding following my four week stint on Sunitinib. Fortunately, it's nothing serious but I was still feeling whacked out after leaving the hospital yesterday.

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It only hurts if I frown..
- 1/31/2009
I'm now a week and a half into using the Sunitinib. So far it is promising. My blood counts seem to be rising again which feels miraculous in the face of some of the things I've been told. But I've had two sets of better readings.

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Approved for Sunitinib treatment
By peter --> - 1/17/2009
After barely a week of discussions with my medical oncologist and the uncovering of three research papers, I have been formally approved to receive Sunitinib to treat my metastatic paraganglioma here in Vancouver at the BC Cancer Agency.

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Small vampire gathering
- 1/10/2009
Being a vampire has come a long way since the days of Nosferatu. I spent Tuesday afternoon receiving two units of blood at the BC Cancer Agency. Two elderly vamps and I sat in reclining chairs in a room with an en suite, regular nurse checkups, electronic monitoring, hot blankets and lunch provided. I was astonished to find that ..

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New instability
- 12/22/2008
My condition seems to have take a turn for the worse over the past few weeks. I had become used to a degree of stability as the MIBG treatment in Edmonton seemed to keep tumour growth in check and symptoms minimal. That vision of my state of health has been overturned rather abruptly.

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Home again
- 12/13/2008
I heard some information a few days ago that patched a significant hole in my understanding of what's going on. But discomfort got in the way of writing. I had heard about some swollen lymph nodes in my abdomen being new cancer growth, but that it could also be treated by my radiation oncologist. What I didn't hear was

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A vacation week at Vancouver General Hospital (VGH)
- 12/9/2008
I've been in hospital for a week after getting strong, lower-left abdominal pains, I still have no diagnosis. But I did have a bone marrow biopsy this morning, thankfully with anesthetic and an addition to my regular morphine dose. Friends say I'm sounding better each day.

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East coast update and a video!
- 11/15/2008
My nephew Alex has a write up on the Jackson Institute (Bar Harbor, Maine) website about the research project on Paraganglioma that he's helping with. And they've just published a rather fun video of him with the research project supervisor.

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Zap!! 2 down and 3 to go..
- 8/13/2008
I've received the second of five external beam radiation treatments on my right hip. So far; so good. I was exhausted on the evening after the first but seemed pretty good yesterday evening, especially considering it is on top of the MIBG hangover. And, most importantly, I'm delighted to actually get the hip tumour treated.

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Radiating in Vancouver!
- 7/24/2008
Back from trip number 8 to Edmonton for MIBG treatment and it's beginning to feel a little Sisyphean in its repetitiveness. Only last Friday morning, I was feeling great, lots of energy and very positive. Then, wham! as the radiation hits my system, comes a very different me. It's not that bad, think persistent cold or flu, but I sure feel grotty compared with last week.

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CgA measurements going down!
- 6/28/2008
I had a pleasant surprise today, hearing that my CgA (Chromogranin A) test from March this year was recorded 200 U/L. This extends a previous slow but steady downward slope which was interrupted last September by an apparent upswing.

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it's worse in Edmonton
- 2/21/2008
I'm back at home after another weekend in chilly Edmonton with low temperatures in the -30 range. But I was there for my own personal central heating plan.. I've now cooled down considerably, and will be allowed within three feet of humans as of Friday.

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Warm weather and trade winds..
- 1/16/2008
I had my fingers crossed that the warm weather in the tropics would rid me of the strange bone discomfort I experience around some joints, and to some extent it has.

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Family tree
- 10/5/2007
While probability seems against yet another case within eighteen months, my youngest brother has unfortunately just been diagnosed with a couple of abdominal lesions after following up on blood pressure spikes. He is now undergoing more scans.

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"Gotcha!" gene now positively identified
- 9/7/2007
My specific genetic mutation (frequently referred to as an "error" or "mistake") has been located. It has also been identified in previous case histories, so is not completely unknown.

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Successful op. and my stable neck!
- 5/22/2007
My young nephew, Alex, is recovering quickly from his surgery. His 6 cm. sub-renal paraganglioma was removed along with a short section of his aorta. This was a difficult operation. Congratulations are deserved for the

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No change - it's official
- 5/8/2007
This is good news, very manageable for now. According to the specialist medical interpretations of both my PET and MIBG scans in Edmonton over the weekend, my various tumours are neither growing nor shrinking.

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An afternoon in the magnetic cocoon
- 4/27/2007
I spent this afternoon in the local cancer institute MRI. The radiographers always tease me by asking me to pick out music before I go in, then realize that they are looking at my neck so I can only wear earplugs..

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Edmonton and genes
- 3/29/2007
My energy levels and fitness seem to have returned, after an unpleasant bout of flu (maybe I should have got a flu shot?) so I'm feeling pretty good - certainly ready for the next round of treatment.

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"Genetic Counseling" flu and more tests
- 2/13/2007
I'm trying to kick the remaining croaks, sneezes and coughs from a couple of weeks-plus dose of the flu. I was worried at first but it sounds like others took it equally seriously. I'm now back on my bicycle, in the pool and trying yoga again, all of which make me feel much better.

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Another Edmonton hangover..
- 12/8/2006
Its almost a week since my MIBG injection in Edmonton and I'm finally feeling a bit more human. I experienced more nausea this time - really not wanting to eat or drink - but having no significant ill effects when I did. My Vancouver radiation oncologist said "more nausea = less tumour" but that he was just guessing. I'll believe him until I hear otherwise!

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What the scans mean.. and Raising Tulips!
- 10/15/2006
After my recent abdominal CT scan and neck MRI I was asked to see the neurosurgeon who had previously examined me. Fortunately, his take on the degeneration was more reassuring.

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Now, extend that right arm..
- 9/20/2006
Another busy few weeks since returning from Edmonton. I have a less pleasant time of it while there, but seem to recover faster and not dip so much at the four week mark. Restricted movement and discomfort in my right arm has been dominating my senses, but I now have some impressive pain killers..

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Back from Edmonton (and Europe!)
- 8/29/2006
I returned from Edmonton yesterday. The treatment went well and a few more issues were clarified. I'm feeling okay but a bit nauseous and tired. I'm pretty sure I know what's wrong with my right shoulder too..

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Stem cells, cancer and pomegranates
- 7/19/2006
Then good news is that I am no longer experiencing the tingling or numbing sensations in my left leg the way I used to. This is very positive since there was an apparently progressive process happening earlier this year.

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Looking better and keeping longer!
- 6/20/2006
A friend wrote that vegetables get radiation treatment to make "them look better and keep longer". Having just received another dose on my right arm, I hope the same applies to me! I've had four specialist appointments and a radiation treatment in a period of seven days.

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More impressive technology.. and update
- 6/6/2006
The 18F-Fluorodeoxyglucose (FluGlucoScan or FDG) Positron Emission Tomography (PET) scan I had on arriving in Edmonton turned up a few more very small tumours which were likely too small to be seen on the other scan rather than of a different type. The technology provides much higher resolution and the benefits of a 3-dimensional image.

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Early release from isolation tank!
- 5/27/2006
I've just been released from the hospital. My radiation count was down to 16 microSieverts at six feet after 24 hours of cooling down from the original injection. But to accomplish this feat, I had to drink so much liquid that I feel like a drowned fish - though a happy one at getting out early!

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Minister of Health Replies
- 5/24/2006
My local Member of the Legislative Assembly wrote to the BC Minister of Health a month or so ago to try and find a solution to the problem of transportation not being covered for essential out-of-province treatments. In his reply, it's not a great surprise that the Minister doesn't really address medically necessary services not being provided in BC or the issue of transportation access. However, he does make the rather audacious suggestion that I should check my private health coverage.

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Flights (to Edmonton) for all!
- 5/3/2006
Gregor Robertson, my local member of the Legislative Assembly, has written a letter (below) to the BC Minister of Health regarding the gap I encountered in the Medical Services Plan health coverage. While they pay for treatment in Edmonton, they do not cover getting or staying there.

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Sciatic nerves
- 4/15/2006
I've been told to "pull back" on my yoga since it is the most likely cause of the increasing numbness I'd noticed recently in my left leg. It's not as if I'd been particularly aggressive. However, some flexing of my left leg, especially stretching my hamstring, does quickly cause pins and needles (paresthesias).

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Platelets and haemoglobin
- 4/7/2006
I'm pleased to say that my platelet (the small purple ones) count and haemoglobin levels are normal. This is a good sign. One consequence of filling people with radioactive Iodine and blasting them with external radiation beams is damage to bone marrow. Bone marrow is the source of blood components like platelets, so when damage occurs, platelet counts drop.

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Mega-vitamins, eats and update
- 3/30/2006
One of the Centre for Integrated Healing (CIH) programs tackles what to eat. This stems from the centre's view of treating the person rather than just tumours, the link between cancer incidence and diet, and evidence to suggest the beneficial effects of certain vitamins, supplements and foods with certain cancers.

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Universal healthcare blues
- 3/21/2006
There's nothing like having to use a healthcare system to highlight its oddities. One loophole I stumbled across is that travel out-of-province for essential, prescribed treatments, that are not available closer to home, is not covered at all. This seems to contradict the Canada Health Act's guarantee of "free and universal access to insured health care."

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Post-Edmonton fallout
- 3/13/2006
Well, in retrospect, the Edmonton trip did knock the wind out of my sails for a week or so. However, I'm feeling pretty good now. I struck lucky in not getting a strong nausea reaction to the Iodine 131 treatment, and while I was a little low energy, I didn't even really go off food - though I did spend more than my usual time on the couch!

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