Karl Kronicles - Continued
Posted on December 30, 2011 by Meg
I was diagnosed with Melanoma round 2 on Nov 25. I spent the next few days thinking continuously about death and disease. Thinking about all the things I may never do, I mourned the babies I would never be able to have, I wished I had spent more time drinking and dinking as a stupid young twenty something. I had spent 72 odd hours dwelling on my own mortality and villifying Karl, the malignant cause of all my distress.
Around about day 3.5, I checked my email.
KARL HAD FUCKING EMAILED ME!! That wiley fucker had somehow created an email address in order to send me a taunting, cruel message. It was surely a manifesto setting out his intentions and mocking me with his impending victory over my home turf.
I felt light headed and short of breath. I steeled myself for the abuse to come. I opened the email.
There it is was in black and white – a link to a swiss watch knock off site.
I guess in hind sight tumors don’t email people. I should have known that.
A Wee Update.
Posted on January 22, 2012 by Meg
Its been a while since I’ve posted anything because there has been very little to report. Last Thursday I decided to make some enquiries and see what was going down as all was quiet on the medical front. I sent two emails and the result was a flood of updates.
1. Karl has been on his way to California for testing – although by Jan 18 he had made it as far as Vancouver… I could have brought him there in a day myself if I know it was going to take two weeks. Anyhoo, Karl is on his way to California now and we should know if I am a trial candidate by Jan 30.
2. More surgery! I am having the large tumour in my back removed next Wednesday (Jan 25). I had plans to attend a de-stressing seminar for cancer patients and the Gentleman’s Poetry Show at the VEC that night, but alas, I will be doped up and stapled up instead. Please put on your best gown or tails and attend on my behalf.
I’m really not looking forward to more surgery but it will reduce my pain level once its out and I’ve healed up. My surgery form says I am having a ‘wide local excision’ of a metastatic melanoma from my left flank – it will take 30 minutes (!!). The last time I had a wide excision it left a big crater and the thing they removed was tiny in comparison. Here is hoping I don’t wake up after my surgery with a newly carved out 20″ waist. If I do, I’m planning to start a burlesque troupe for lovely ladies with retro figures and grisly scars.
3. Testing starts Tuesday for my treatment. I am going to Vancouver for a CT Scan Tuesday to see how much the disease has spread since my last scan on Dec 20. The instructions tell me to eat as much salty food before hand as possible. Done. This test is required whether or not I am admitted to the trial. Then its back to Victoria for surgery on Wednesday, then a visit to my GP on Thursday to talk about the mountain of medical paperwork I need to get done. Then back to Vancouver for a dermo visit and blood tests Monday Jan 30 (pending trial participation) followed by a visit to the oncologist on Wednesday to either start the trial or discuss my remaining options if the trial isn’t one of them.
All this from sending two emails to see what was going on. I guess if there is a moral of the story its that you are your own advocate and the medical system will not stop to see if you’re fallen behind.
In other news, I have started to see a counsellor at the cancer agency to help me with my … rage? maybe not the right word. Lets just say I’m very dissatisfied with current events and need some help to make the best of this new set of circumstances.
The Bright Side.
Posted on December 27, 2011 by Meg
Its important to be able to see the good stuff in any situation, so here are some of the highlights so far:
-At 29, the girls were starting to droop just a bit. A partial mastectomy has brought my right boob right back to 22 year old heights.
-My surgeon is super hunky
-Being told to bulk up. Ideally by drinking meal replacements, but bacon and cookies seem to be working too.
-Free rides on the ferry as long as I’m going to a doctor on the other side.
-Lolling about in a house coat watching cooking shows when I would otherwise be at work.
-Lots of quality time with my family while they make me tea, fluff my pillows and get things off high shelves for me.
-Skin cancer seems to cure eczema. How ironic.
-The mundane petty details of life no longer bother me – except when other people complain about them.
Waiting and stuff
Posted on January 3, 2012 by Meg
In December, I attended 8 medical appointments, one surgery and 2 radioactive procedures. I’ve been groped by more doctors and med students than I can count, x-rayed, sedated, cut, stapled, irradiated, ultra-sounded, jabbed with a spring-loaded needle and even butt probed. The culmination of all this will be a pathology report and a treatment plan to be implemented starting with a visit tomorrow to my new Vancouver based oncologist Dr. Savage. I hope her name matches her approach to cancer cells and not her bedside manner. The pathology report is mostly based on the tumors removed during my surgery and tells them the physical structure, genetic specifics and the perhaps the channels through which it is spreading.
The really important thing to stress is that as of Dec 20 my organs appear to be totally clear of cancer !! This is a really good thing for obvious reasons, but I’m also told tumors outside organs respond better to chemo. The approach will likely be a systemic one focusing more on widespread cancer cell destruction rather than individual tumor removal, although some of the tumors are obvious to the naked eye and just below the surface of my skin and I would love to have a few more taken out.
And so Mrs Lincoln, How was the play?
A fine question as thankfully there is more to life than foot long shit sandwiches. Christmas and New Years were fantastic. I spent every minute for the last 2 weeks with those I love the most. I’m healing from surgery pretty quick. The nerves in the various sites are regenerating and its pretty painful but it means that my body is fixing itself. I’ve spent the last few days in Victoria chilling with my favorite homies and reconnecting with the man who knows and loves me best. I’m relishing this window of normalcy before everything gets totally ass backwards and unpleasant. Life may never be so sweet as when you are living it up while death gives you the stink eye from across the room.
Posted on January 5, 2012 by Meg
Optimism is like a pair of nylons: It will stretch out to hold an incredible volume but when stretched too thin, it becomes vulnerable to punctures and may start to run.
People always tell cancer patients to “stay positive!” and “look on the bright side!”. If this is your natural disposition, perhaps it is possible to have a rosy view of the dank spider infested hallway laid out before you.
If you are not naturally blessed with such a disposition, forcing yourself to stay positive and peppy can take away precious energy that absolutely must be spent on the health of your body. I recently read a book by Gabor Mate called When the Body says No: The Cost of hidden Stress. It is entirely about the disastrous health consequences of forced happiness, repressed emotions and generally putting your emotional and physical health in the back seat while you take care of everyone around you. Its a good read and he documents cases of illnesses from MS to chronic fatigue even to melanoma where the constant bodily stress of repressed emotions leads to serious and fatal illness.
I say all this because my optimism seems to wane once a day between the hours of 2-5pm, or between 4-6am when I wake up in cold sweats unable to think about anything but death. This is when I tell my cancer to go fuck itself instead of draping it in a pink doily and inviting it around for a cheery spot of tea and a massage circle. Metaphorically speaking of course… although I suppose Karl’s brethren drink tea with me whenever I do, but I don’t make pleasant conversation with them.
I think I might be a Real Optimist. What I mean is that I prefer to look any situation directly in its beady little mother-fucking eyes, have a real sense of its gravity and then start to look for an upside. This means no kidding myself, no denial, no bullshit, but less despair too. Especially in this situation, there is nothing I can do to change my reality so I had better find a way to make living in it more comfortable for my body and my psyche.
I do feel my optimism reaching critical mass though and I don’t think clear nail polish will contain the holes in this case. I desperately miss having problems with solutions. Problems that can be fixed and then you move on to other more fun stuff. What I need now is something tangible to focus on… treatment perhaps… that would be nice.
Optimism, Part II
Posted on January 5, 2012 by Meg
I spent 2 hours at the BBCA Ambulatory Care Unit in Vancouver yesterday. I met with my new oncologist, Dr Savage, her resident assistant and the study coordinator for the trial they want me in. All three were wonderful. The good doctor has a Plan A, a Plan B and a Plan C for me and says that whatever they give me, I should respond well to because a) apart from having aggressive stage 4 cancer, I am otherwise young and fit as a fiddle and b) so far the cancer seems to be contained in my soft tissues and bones.
Her first order of business is to see if I am eligible for a trial of a drug called Vemurafenib. This will require a test of the tumor tissues removed in December to see if my cancer is the result of a gene mutation that leads to the over production of a protein that increases the growth and spread of cancer cells. The drug works to shut down the production of this protein, effectively shutting down growth and spread of the cancer cells. That would be nice. However, research indicates that eventually, or possibly within months, cancer cells find away around the drug and mass production on the malignant assemble line begins again.
Upside: As recently as two years ago, there was only one treatment for metastatic melanoma and it had about a 10% success rate for halting tumor growth. Now that treatment is Plan C.
It will take about 3-4 weeks to get a tumor tissue sample from Karl sent from the tissue bank at the Victoria Cancer Agency to California to be tested for this mutation. The drug was pioneered in the US and is widely available there but has yet to approved for use in Canada. The company that holds the patent is sponsoring this Extended Access study so that patients in Canada have access to the drug and if trials prove successful without too many crazy side effects, the process will start to make it widely available in Canada.
In the mean time, I will *hopefully* get to be one of those test subjects. If it turns out I have this mutation, I will start a crazy battery of tests and scans to establish if I am physically eligible for the study. They will do an inventory of all my tumors which means new CT scans (at 5-6 weeks old, my last ones are ‘stale’), an MRI of my head to make sure there is no disease in my brain (I thought they had figured this out already but apparently no one ever scanned my head…), visits to a dermatologist and a gynecologist to determine that I don’t have any basal or squamous carcinoma (‘treatable skin cancer’) growing on my skin, anus or cervix – these are all possible side effects of the drug they would give me so they want to make sure I’m clear to start with. If all these tests come back to their satisfaction, I will start taking the drug in about 4 weeks.
Assuming all is a go, this drug is my best treatment option. About 40% of melanomas are the result of this mutation and about 40-50% of people who take the drug see a decrease in tumor growth and size that last at least for some months.
My doctors are optimistic about my treatment and that I will respond well. That is great to hear because up to now, it didn’t seem like there were many straws to grab on to for encouragement. All that is left now is for me to wrap my head around the nastiness of this situation. My understanding is that metastatic melanoma is terminal. However, unlike conventional time bombs I see on TV, I don’t have a conspicuous count down clock strapped to the front of me. Heres hoping the lovely Dr. Savage is a biological explosives expert and knows which wires to cut to stop the clock for a bit.
Just at the right time.
Posted on January 9, 2012 by Meg
Last Saturday my beloved and I went on the best first date ever. I almost regret that we’d been dating for five years before this happened. We were relaxed, spontaneous, told the most off color stories that neither of us had shared before, I got to see his dance moves for the first time and we both spent three hours playing music bingo and singing along to every song we knew. It was amazing – I had one of the best nights of my life. The tequila sent over by our neighbors probably didn’t hurt either.
As the evening progressed, we started to interact more with the gang of early 50 somethings at the table next to us. They were dancing like fiends, drinking their faces off and talking loudly about the good old days, their errant teens and everything in between. One of them, a chap who was sporting the best 70′s hairdo I’ve ever seen, a flowing blond mane reaching almost to his shoulders and slicked back oh so carefully, was particularly animated. Having just had surgery on my leg, my dancing activity was restricted to my chair. The ladies next door told my beloved that I absolutely had to dance with them and he told them why I wouldn’t and the extent of my current health issues.
Next thing I know, the Adonis of Hairdos comes up to me, looks me in the eye and tells me that he has stage 4 Liver cancer and has been battling it since 1999. He has had chemotherapy 4 times and is about to start a 5th round in a few weeks. He has lost his hair 4 times and each time he finishes a round, he grows his hair out as much as he can before he has to start again. He told me that the only secret to dealing with this disease is to believe that you will make it and live your life as best you can everyday until you can’t anymore. Despite having liver cancer, his man goes out once a month with this motley posse, lives it up and drinks his face off. Thirteen years later, it seems to be agreeing with him. He should be the poster child of chemotherapy and the body’s ability to repair itself.
Strangely enough, when I was feeling down just the night before, my uncle texted me and said that when my dad was feeling down with his situation, he would repeat to himself, “I have today” and make crude jokes about the shitiness of it all until he hurt from laughing. Meeting this man reinforced this advice because here was a guy remarkably similar in age, situation and temperament to my dad, telling me exactly what dad would have said were he here.
Every few days, I hear something or meet someone that renews my faith in life. In living. In seizing every fucking thing I want and not backing off anything just because I might not be around to enjoy the spoils later. Thank you Hair Adonis and thanks to my beloved for one the best nights of my life.