Wednesday, January 31, 2007

Checking in

I'm ok, just hurts my arm, neck, hand too much to type. Working on different pain med combos.

IL-2 in 2-3 weeks. Hopefully I'll be able to type more by next week.

Wednesday, January 24, 2007

Buffalo revisited

Finally, I'm writing. Can't say that I really want to but I have to before life slips by undocumented as I can't trust my terrible memory to store the details. I have a terrible memory and those who know me would probably say that's an understatement. I constantly forget details of friends' lives making me look like a bad listener or that I didn't care. It's not that at all, god, I can't even remember what happened to myself! It's a total information coding problem, I'm clearly brain-damaged so people just have to learn to love me for it and I have learn to love myself despite this brain blip!

Don't ever ask me to review a movie for you. I can't. I can remember whether I like it or not but I can only remember the story line for a couple days. Same with books. But I enjoy them nonetheless as momentary entertainment. My mom is the exact same way so whatever this problem is, it's herditary and it gets worse with age. I started noticing my memory was going down hill at around 20 and in the last 10 years it's gotten to the point that people comment on it. Oops, how's that for a free-flowing rambling tangent? I really just seem to write what I'm thinking instead of thinking about what I'm writing. I guess that's the easy thing to do and I like easy. Oops there I go again...

It hurts physically to sit at the computer. It hurts more to type. I have to get my meds readjusted.

Man, this month has been physically and emotionally exhausting. I'm past the days of sleeping 18-20 hours a day and only eating grapes and walnuts. There was a couple weeks there that if I wasn't in bed, I was on the couch and I was too tired to fix myself drinks or meals, not that I felt like eating anything. Think of the one food that repulses you so much you can't even imagine taking a bite of it. That's how I've been with ALL foods, and I loooove food! The only things I could stand to eat were grapes, walnuts, english muffins with margarine and honey, popsicles, mandarine oranges, yogurt, and sometimes cheerios with banana and soy milk. It was a gradual progression to even get to that point though. In the beginning it was just a few grapes and a couple walnuts. Literally, that's all I could bare to eat in a day.

I'm proud to say that I've come a long way since even last week and today I had my cheerios and banana for brekkie, an Amy's bean burrito for lunch, and some left over stir-fry on rice for dinner. I'm not enjoying my food, but at least I can tolerate it. I'm sleeping 11hrs/night but not taking naps sp that's good. I'm tired but can go out if I have to for a bit.

No one can give me a reason why I've been feeling so shitty. The liver ultrasound was negative, I'm not pregnant, blood work doesn't show anything besides the fact that I'm mildly anaemic but so mildly it wouln't account for such severe fatigue. Some say it could be from being off the steroids but others think that a month after the fact is far too late for me to still be having withdrawal symptoms. Other theories are depression and stress. I tend to think it is 100% steroid related as is started right after I stopped the steroids (Nov/Dec were wonderful months filled with steroid enduced uber energy and euphoria), is slowly getting better and happened before I got the stressful news that I am finally about to write about.

At the beggining of January I had a CT scan. The scan showed that my organs are clear (yay!) but that the disease has spread a lot in all the areas that have previously been affected and has also taken up shop in my brachial plexus. Yup, the same area that Toronto said had disease back in September but then London said didn't so I didn't do IL-2. Another scan in November confirmed that there was still no disease in the BP even though the loss of mobility in my arm and hand (radial nerve damage) suggested there might be. So, now it's official, it is there. It can't be removed, and there is a big tumour in my axilla that can't be removed. I also have TONS of other little areas of disease in that whole region. I can see and/or feel some of the tumours and others are there, just too small yet to see or feel.

My right breast has 4 tumours that I can feel and they are getting so big that that they are starting to blend together so it almost feels like 3/4 of my breast is a rock. I've got others on my back shoulder and upper arm that are walnut sized and then at least 10 other pea size ones I can feel that by this time next month will be walnut sized. They are popping up like crazy and will continue to do so unless something stops it. Surgery can't stop this.

So, it's off to Buffalo for IL-2 (paid for by the Ontario gov't). I've explained in a previous post why I have to go to Buffalo so I won't get into that. It'll be sometime next month before that treatment starts, I'm guessing towards the end of the month but it's hard to say.

I wish I had the energy to write about what a complete bitch my medical onc in London is but it would take me forever to recount my last two meetings with her. I really want to like her because I'm caught between a rock and hard place in that she is the only onc in the city that deals with mel patients and I don't want to be travelling back and forth between home and some other city for my follow-up care.

I won't have to see her very much as I'll be treated in Buffalo but I presume I'll be seeing her for routine follow-up between treatments. I don't doubt that she can do that, it's just that she is condescending, lying, manipulative and delusional and I know that everything she says has to be taken with a grain of salt and I'll have to verify her "information" on my own. Man, I wish I could write out the things she has said to me... things so off-base, delusional and/or rude that she has had me in tears and I mean big ugly sobbing tears because she was just so wrong in certain things and wouldn't hear otherwise. Such a power-tripper. It's her tone of voice, it's the way she words things. It's the stare. It's the whatever-I'm-saying-is-important-but-whatever-you-say-I'll-dismiss attitude. Fuck her.

My second meeting with her this month was basically a mediation session with the social worker to get me the information I didn't get in our last meeting while she was persuing her own agenda and yapping. The social worker and I have decided that she (the social worker) will be attending all my future appointments with the medical onc so I can have a witness. The main problem is that the doctor will tell me something then later tell me she didn't say that, or tell me I told her something that I didn't. I feel like I'm in the twilight zone. Luckily Derek and my mom were in the first meeting so I had witnesses there to assure me it wasn't me that was crazy and they agree that she is a major piece of work who specializes in de-humanizing people. Today, the onc was on her best behaviour as her colleague was present but she still flip-flopped on what she said and managed to avoid answering basic questions such as "what are the different options for me at this point, and what is your recommendation?" until the question was re-phrased 3 times. Gah! Anyway, in the future, I have my back-up so it'll be alright. I don't have to like her. It would be soooo nice and I deserve to have better care but travelling for it doesn't make sense when the options will be the same. If I need to go onto another treatment in the future then I will seek a second opinion for sure but if the treatment is offered in London then I'll have to deal with her.

Please, I don't need anyone from the U.S. telling me to go to M.D. Anderson or anywhere else. There is no way on earth I could afford to. Imagine if you had to pay 100% out of pocket for every visit, every test, every treatment and the air travel. Give me a break. The only thing the U.S. can offer that we don't have is a gazillion clinical trials (and lets face it, getting a good response out of clinical trial is like winning the lottery), routine PET scans (controversial anyway) and GAMMA knife for brain mets (in general only buys patients a few weeks/months anyway...yes, there are always exceptions!). So, for that it ain't worth going into debt $100,000 when the end result is almost always the same at this stage. I don't mean to be a pessimist and I believe there is always hope but sometimes you have to take the reality of the statistics into consideration and consider the financial devastation you could be leaving a loved one with.

Wow, this has been a depressing entry. I'm gonna change it up a bit next time and do the entry that I really wanted to do, not the one I had to do just for updating sake. Since it's the new year and I think I have all my photos from last year on the computer, I wanted to upload pics from my favourite adventures of 2006.

Tuesday, January 16, 2007


My hair hasn't been this short since 1993.

Finally had to take the plunge and do what makes sense since I can't really "do" my hair anymore, which really for me means sticking it in a pony tail.

I'm pleasantly surprised with the results and am relieved I can really just "wash and go" now.

A serious blog update is in order but I just haven't felt like it. I have much of my energy back, but am still taking it easy and if I don't I get really tired. My appetite is much better but not nearly back to normal. I've only had one "real" dinner in 2.5 weeks, the other times it's cereal and banana or grapes and an english muffin, that sorta thing.

I'm off to my abdomen ultrasound. They sent me home yesterday because I told them I had a protein shake before coming. Oops, forgot my tummy was suppose to be empty. That was a 7:30am appt. and my make-up today is at 9:30. Too bad I had to have a bowl of grapes to tide me over... My blood sugar gets really low and I get the shakes and get really weak (probably accounts for a good part of my fatigue the psat couple weeks since I haven't been eating consistently) and since I have to drive myself to the appt., then walk thru the hospital I just thought SCREW IT, I have to eat something! So I just won't tell the receptionist. I'm sure the u/s tech will see the mashed up grapes in my belly or wherever they have travelled to by 9:30am but they'll just have to get whatever imaging they can considering. It was oredered by my surgeon because of my fatigue. Since I'm getting better I'm pretty sure it was the roid withdrawal and the wound infection throwing my body off. Whatever.

Man, I have sooooo much to say but it makes me tired just thinking about it. I have to try and write it out this week before it never gets documented.

Shit, I' gonna be late, I'll edit this later, there must be even more typos than usual!

Saturday, January 06, 2007

There are so many words for vomit... which one shall I use?

I'm so tired. Sleeping is all I want to do. Felt the same last week up until the weekend when I somehow perked up for 4 days, drove 2 hrs. to Toronto, partied (lightly) for New Years. The day after we got back home, the fatigue set in again. Is it depression? Is my fibromyalgia back? It's been years since I've had a fibromyalgia episode.

I attributed the fatigue last week to steroid withdrawal but after my 4 days of chipperness I thought I was over it. Makes no sense. I'm scared something is really wrong. Do I have tumours near my heart, in my liver, somewhere else that would account for the fatigue? I don't know much about physiology.

I've been crying a lot. I guess that optimism, strength, cheerfulness, inspiration I had been feeling for a couple months was steroid induced. It wasn't me, it was the drug... damn, that's a disappointment. I really hope the steroids weren't just masking this mood, but that this mood is just a withdrawal symtom. I could sleep 24 hrs. a day. But I have to get up for certain things, and to appear ok. Today I went to a movie with my dad. I nearly fell asleep. Napped from 11:30am-12:30pm (had to get up for movie) and 4pm-9pm then Derek woke me up. I made myself get up to eat something. I have no appetite, the thought of most things makes me queasy, but it is so important to stay nourished. I had PB&J on an english muffin, grapes and applesauce. Then I perked up enough to watch The Black Dahlia on DVD. I liked it, but found it really difficult to follow. Now it's 12:30am and I'm about to pass out.

Had a CT scan today. See my surgeon on Monday and I hope he has some preliminary results at least. Of course, I'm scared shitless what they'll find. I know of 4 probable tumours: breast, shoulder, side, armpit... scared he won't or can't take them all out. Especially the one in the axilla. That area has been pushed to it's limit. Unless they bring in a plastic surgeon, there is no tissue or skin left to stretch and sew back. And I don't want to be cut anymore. My breast will be mangled, my arm will get even bigger if they do the axilla. What if I get even more nerve damage? My arm is destroyed. I'm too embarrassed even to post a pic of what it has turned into: a big fat, limp and lifeless, deformed mess. But I suppose I should to document what I have been through. If I don't make it, at least this blog will still exist.

I don't know when to stop the cherry picking. But they do hurt once they reach a certain size and they grow at such an exponential rate they really can't be left in. But at what point do I try IL-2? Before I had said I wanted to cherry pick until it spreads to an organ and then I'd go to IL-2. But if I was one of the lucky 5% that gets a long remission or even one of the 20% who gets a short remission, I'd get a break, without getting more disfigured by surgery. But the treatment would make me unimaginably sick. I can't fathom going through it for an 80% chance I'll get no response. My brain hurts thinking about it. I'm so sick of being "sick". Yup, I'm throwing a fucking pity party and no one is invited because I'm too tired to socialize.

I want to do a combination therapy recommended by a naturopath either involving high dose vitamin C or mistletoe (or both) and a bunch of other supplements, but we just can't afford it. Mistletoe is the #1 alternative adjuvant treatment in Europe (google it, it's true) and while VC by i.v. is controversial, even some doctors in the states prescribe it as a last resort and there are many many documented cases of complete remission in different diseases, not just cancer. But these are anecdotal cases and studies have not shown it to have significant survival benefit.

It costs $140/week or $50/week if I can find someone who is willing to administer it to me intravenously outside the Naturopath's office. I don't have any nurses in my family though and can't find anyone else. It sucks, because as if we can afford $140/week on top of the $200-300 we already spend on supplements. I know, I know, it sounds crazy, but because I've been alive for over 2.5 years since it recurred in my lymphnodes, and so far has only recurred in soft tissue and nodes, it's impossible to say whether or not the supps have had a role in this. I can't just stop them, in case they have!

Well, this has been pleasant. Needed to vent more I guess. I feel like I just puked up all my worries (ok, a fraction of my worries) all over you. What a mess. I feel like I may have more to come though so beware!

Goodnighty night.

Tuesday, January 02, 2007

Happy Holidays 2006

Once again, no spell check. I think it's a Mozilla Firefx problem, but I can't post pics from Explorer. Oh, well.
January 1, 2005 we moved into our first house and here she is a year later! It's much larger than it looks because it is looong. It's a duplex (note the two mailboxes) and we rent the front unit to my dad and Derek and I live in the back apartment. Here I am posing with the Christmas lights Derek put up (what a great job for his first time ever!) the day after our city got dumped on by the worst snowfall in 30 years. The city was shut down, even the transit system and every school. It's been such a wacky winter, we didn't have any snow accumulation before that day, it melted by the end of the week, and we haven't had any snow since! Yup, it was a green Christmas this year. But a great Christmas nonetheless!

While in the middle of my steroid-enduced "Euphoric Energizer Bunny" state that lasted from mid-November to early December, I had the bright idea of hosting a Christmas feast/party at our place for 17 people. I started to doubt my sanity as I slowly tapered off my steroids during December and felt my get-up-and-go slowly get up and go. I took my last dose the day before the party, and had enough umph still in me to pull it off virtually all by myself (thank god for mom and her husband Dave who did all the chopping though!). It felt really good to be productive and self-reliant again-- I had a lot of fun preparing and then eating and kickin' back with friends!

I know, you're wondering what on earth a vegan couple served to a mish-mash of omnivores, vegetarians, and one friend with celiac disease. Well, I wanted to keep it really simple, so I made things that were easy peasy to prepare and served it buffet style:

  • Homeade hummus, babaganoush and olive tapenade served with crackers (rice crackers for celiac) prepared the night before
  • Rosemary and olive oil roasted potatoes
  • Green beans roasted in rasberry balsamic vinegar and olive oil with dried cranberries and slivered almonds
  • Mock "ham" (soy based) baked with pineapple slices -- had many omnivores comment on how good the fake ham was!
  • Mock "shrimp" ring (also made from soy) -- again, even the real shrimp lovers were impressed!
  • Cashew and poppy seed cabbage salad
  • Portobello mushroom bake-- i have to share this recipe because it is sooooo delicious I think everyone should know about it.
  • 3 pies. I made an apple pie and a chocolate mousse pie made with tofu that was literally to die for IMO, and I purchased a celiac friendly walnut pie that was super scrumpcious!

Portobello Mushroom Bake

1/2 c. almonds
1/4 c. olive oil
1/4 c. Braggs or soy sauce
1/4-1/2 c. water
2 tbsp balsamic vinegar
3 cloves garlic, roughly chopped
1 tsp dried rosemary
1 tsp dried oregano
4 large portobeloo shrooms, cleaned and stems removed
1 medium onion, chopped

Preheat oven to 350F. In a blender or food processor, blend the almonds until powdered. Add all other ingredients and blend until well combined. In a large bakind dish, place mushrooms upside down and pour mixture evenly overtop. Bake for 20-25 mins. Makes 2-4 servings.

Our first Christmas tree. We picked it together, Derek chopped it down himself from a tree farm. Even though we've been living together for 7 years, we've never done the tree thing. I think it was the combination of it being our first house and the fact that I was soooo into the Christmas spirit this year that we did the tree, the lights, the party, and also for the first time exchanged stockings.

While it is my 3rd Christmas with cancer, it is the first one in that time that I've felt really well, even though technically, I'm much sicker. Last year sucked because I got the blow a couple days before that I had my 1st recurrence (well, technically my second) and I was still getting my energy back after stopping Interferon 2 weeks prior. I was on my way to Kingston with my brother by bus and scheduled in an appt. with my onc during our layover in Toronto when I got the news. I gave my bro the gifts and hopped on a bus back to London because I needed the comfort of Derek's arms. He can make everything ok just with his embrace. The year before, I had just completed my highdose regimen and felt too crappy to travel to Kingston.

This year, my mom came to London for Christmas! Now that we have a house with a diningroom we can do Christmas! And, we did do it, quit nicely I might add. Derek cooked the entire meal (minus the turkey for the meat-eaters) thank god because by the 25th I was feeling really crappy from the steroid withdrawl. I was tired, nauseated, bloated, lethargic. He did a fantabulous job with dinner, I just wish I was able to enjoy it more. The rest of the fam (just mom, Dave, and my brother) sure enjoyed the feast though. Derek and I had a yummy Tofurky in case anyone is wondering what we eat instead of birds on holidays.
This is us on New Year's eve in Toronto. You caught me, I'm wearing the same top I was at our party. All I can say is, I like it! It has flowy arms that hide my lymphedema quite nicely without being a big frumpy sweater.

I'm really not liking how fat my face is, I think because of the steroids. Well, I'm off them now so it should go down soon I hope. I don't recognize myself when I catch glimpses of myself in windows or store mirrors. At home, I don't notice as much. I've gained almost 10lbs. since November and am at my highest ever weight because of it. I think it is because the steroids turned me into a ravenous pig for a few weeks while I was at the peak dose. The roundness of my face could be pure fat, but I am hoping it's the typical "moon face" that people get as a side effect of Decadron which goes away sometime after you stop.

Sure, it's all so trivial and so petty compared to what others go through. And I tell myself that. But the automatic thoughts are hard to push away. It's hard to look in the mirror and barely recognize yourself. It's hard to see the effects of cancer treatment so blantantly displayed in front of you. It's something I haven't had to deal with yet in my journey. All my scars can be hidden by clothes. But now, I have a big fat face for all to see and my right arm has ballooned even more since I've had those wounds that got infected and STILL won't heal.

In fact, I've had a homecare nurse come everyday to clean, pack and dress the wounds for a month and a half and while they were progressing slowly, it appears I have another infection and one wound that was 90% healed and didn't need special attention is now infected too bringing the count to 4. I find out tomorrow if I'm suppose to start i.v. antibiotics.

Anyway, I know I shouldn't care about how I look, but I do. I want to be attractive to my husband. I don't want to be a chubby, round faced, double chinned, fat-disfigured-armed, tumour ridden wife. He says I'm beautiful anyway, and I do believe him, but how the hell am I suppse to feel pretty and sexy inside when I'm not myself anymore? When my breast has a tumour again. When my wrist hangs limp and I can no longer straighten my elbow. When I can't do my hair nicely, can't even put it in a pony tail because I can no longer manipulate an elastic, hold a blow dryer or flat-iron. I have to wear baggy shirts so my arm isn't as noticeable. No more cute tops for me. I miss having showers and taking real baths. I can can't get my wounds wet so I have quick uncomfortable and shallow baths and Derek washes my hair while I lean over the tub. This has been going on for months as I have surger after surgery and now those damn wounds that won't heal. And more surgery likely to come. It would be so nice lay back and relax in our deep clawfoot tub again...

I beat myself up even more for caring about these things. There are far worse problems in the world and people suffer much much more. But psychologically, I get it. With every new "loss", I will go through a period of mourning until I am able to accept the new normal. I had more or less accepted the state of my arm until it recently got much worse and bigger. It will take a bit to adapt to the new larger state and the fact that I will never be able to whip my hair up into a pony-tail again. My weight gain makes me think mostly about how I can't just jump on the elliptcal we bought in September or go for a run anymore. Maybe one day I'll work out again, but it has been really frustrating being forced to be so lazy the last few months with all the pain and then surgery after sugery. We should have bought a good recumbant bike instead of the elliptcal because I think that would be fine on my arm an neck. We couldn't have known though.

God, I'm tempted to erase this because I feel like such a whiner. But I know it's natural to have these ups and downs. And I know it's ok, even if it isn't stoic or graceful, to mourn every loss that comes along. Just like I had to mourn the loss of many of my dreams, like having children. To be resistant to change is natural, especially changes that were forced upon me and which make life just that little bit more difficult when life seemed difficult enough. Having to give up even more control of my body is difficult to accept but I'll get there, it's a process and this whining is part of it.

Every Christmas, New Year's and birthday that passes since I've had cancer seems like a miracle because I know it could easily be my last, so much more so than the average person. I'm so thankful that I've now had 3 Christmas and soon 3 birthdays (pretty darn confident and hopeful I'll make it to Feb. 7th, my 30th birthday!) since being diagnosed when it's always in my mind that it could be my last. This year more than ever, since I've progressed to stage 4, I am even more aware of this possibilty this could have been my last Christmas. I think that that is really what was behind me "getting into the spirit" and pushing for a fun New Year's out instead of the usual house party or just staying at home. I want to have great times with family and friends and make sure I do things I want to do now instead of bowing out out of pure laziness and the knowledge that there is "always next year". I can't take that risk because I may not get the chance. In 2004, I was so unsure if I'd be around in 2005. I've made it to 2007, so much longer than many with this same disease. I'm so grateful for this time yet so scared my time is running out. I feel like a ticking time-bomb. I hate this fucking disease! One day at a time, I'm just trying to buy time until there is a cure.