Saturday, June 23, 2007

Sarah's Eulogy

Good Afternoon. I’m Mina and this is Liz and we’ve been best friends with Sarah since High School. We are deeply honored that Sarah has asked us to help celebrate her life with all of you. We would like to share some of our favorite memories of our dear friend.

Anyone who knew Sarah, knew she was determined and was never afraid to go after what she wanted. One of our favorite stories is how she got Derek’s attention which would later be referred to as the “Infamous Sweater Incident”. After high school Derek and Sarah both worked at Wal-Mart. She had been sweet on Derek for a few weeks, but wasn’t having much luck. One night she deliberately left her sweater at Wal-Mart knowing Derek’s shift ended later. Because Derek lived close to Sarah’s mom’s house she called him at work when she got home as asked if he could take her sweater home with him and she would come by his house to pick it up. Later that night she walked to his house to get her sweater and Derek invited her in for a drink. Her crafty plan had worked and the rest is history.

Another example of Sarah’s determination was shared with us by her soccer teammate and friend Abby. Abby and Sarah met when they both signed up to play for “Sisters in Soccer” in the summer of 2003. At the time Abby had recently moved from New Zealand to London and didn’t know very many people. Abby was really nervous to sign up as she hadn’t played soccer before and didn’t know anyone at registration. Coincidently Sarah didn’t know anyone either and they decided to put each others name down as the person they wanted to be on the same team with. This meant a lot to Abby because she was a friend before she was a friend and a friend when she didn’t need to be that is the person that Sarah was. The league was really social and they never took themselves too seriously. Abby played back in defense that year with Sarah, whom Abby described as a seasoned veteran- who played since age 3. Sarah had a powerful kick, and Abby always felt part of a force to be reckoned with when lining up beside Sarah to face the other team. Sarah definitely had skill and poise on the soccer field and looked good playing.

During one of the last games Sarah played in the second season, Abby and Sarah’s team was losing pretty badly and for fun they decided to change it up a bit. So for the second half the forward positions played back and the back positions played forward, they had nothing to lose! Well, didn’t Sarah go and score their team’s only goal, to the dismay of the other team who thought they were so much better. Sarah and Abby’s team still lost, but it was a sweet victory to get that one goal that denied the other team a shut out.

Sarah has also always had a sense of adventure! From Junior Kindergarten she was part of the French immersion program and in high school she had the opportunity to take some credits in France over the summer. Sarah and Derek both fell in love with Central America. They backpacked around Mexico for a few months together and later returned for another trip to Guatemala. Sarah brought us back Guatemalan worry dolls, which are supposed to take your worries away. Those dolls have lived in Ecuador with Liz for a year and accompanied Mina to New Zealand, Australia and Thailand. Sarah also spent time in the rainforests of Costa Rica with her mom, drove the Cabot Trail with Liz in Cape Breton, traveled out West with Derek to visit their close friends in B.C., honeymooned in Bermuda as a wedding gift from Sarah’s dad and walked the streets of Greenwich Village in New York City. Sarah’s last travel adventure took her to England to visit an old University roommate Lamia. Sarah explored the sites of London and took fabulous pictures of herself with the like’s of Nelson Mandela, Brad Pitt and George Cloney at Madam Tussauds Wax museum.

Sarah also lived her life with conviction and was very socially conscious. She loved animals, especially her adopted cats Misty and Mojo, Sarah made an effort in her life to eat a vegan diet and not buy leather products. Sarah also had a deep affection for children. She adored her nieces and nephews and dreamed of one day becoming a mother herself. Even when she was too sick to work, Sarah volunteered her time at a hospice and with children’s programs to enrich her life and the lives of others.

During her illness Sarah also became very vocal about patient’s rights. She encouraged other women battling cancer to advocate for themselves and live life to the fullest. There were two women that Sarah worked with who also had been diagnosed with cancer and they instantly connected. It’s was a connection that is very difficult to explain to others who have never been on this particular journey in life. There were three of them in the office who started a club which they appropriately named the “C” Club and they would laugh about it because they certainly did not have people asking to join. They would go out for dinner on occasion and it was an evening out that they each looked forward to. They found a lot of support, humor, comfort and friendship by being together.

Sarah was one of the most resourceful people we have ever met. She could write anyone a resume, find them a job, get them an apartment, decorate it and re-vamp their wardrobe within 2 weeks and for under $100. Sarah planned her entire wedding from scratch using the internet and telephone. She designed a gorgeous wedding on a dime from the food to the decorations. Her mom Pat, was her right hand lady throughout the execution of the day ensuring Sarah’s detailed plans were carried out as she envisioned them. It was a beautiful July day in Derek’s parent’s backyard. The Kaskiw’s put in countless hours of hard work ensuring their home and backyard looked perfect for the wedding. Sarah made a breath- taking bride and everyone there was honored to take part in the celebration of Derek and Sarah’s commitment to each other.

Shortly after she married Derek, Sarah fulfilled another one of her dreams, owning her own home. They moved into a house on Empress and her eye for decoration and sense of style combined with her dad’s carpentry skills turned it into a home that Sarah and Derek are very proud of. Sarah hosted several creative get togethers at their home including a vegan croquet party and last year held a Christmas exchange for 20 of her and Derek’s closest friends.

Sarah is undeniably a wonderful friend. At work when a co-worker was going through a tough time Sarah could tell something was wrong. One day she casually walked by her co-workers desk and put a stick-it note on her computer, and continued on her way without saying a word. Her co-worker looked at the piece of paper to see a big happy face and note saying "I thought you might need a smile today". Well it worked. When she went to thank Sarah for cheering her up, Sarah told her to keep it with her as a sign that would always be there. From that day on, her co-worker knew that she could always count on Sarah to cheer her up ... simply with one of her big radiant smiles.

She talked us through lost jobs, break-ups, family drama and very bad hair-cuts. Sarah always took the time to make important occasions special. She was always the one who remembered our birthdays. Each year she would call us to remind us when the other ones was. Not a year went by that we didn’t receive a card. Last year for my Birthday Sarah arranged for the 3 of us to get glamed up with Mac Makeovers and go out for dinner. None of us wears too much make-up so we asked the Mac girls to take it easy on us. Our Mac Makeovers lasted a total of 5 minutes each. Sarah came out looking fantastic, but unfortunately and Mina and I looked like someone had taken a marker and drawn on our faces. Sarah was so excited and she loved it so much that we didn’t have the heart to tell her we didn’t like it. On the way to the restaurant Mina and I took turns secretly whipping the make-up off hoping she wouldn’t notice. By the time we got to the restaurant we had wiped most of it off and Sarah was not to please. Regardless it was a wonderful and memorable day. The three of us always had a great time together whether we were having a tea, a drink on her deck or out on the town. She was a true friend.

If you could get Sarah out she was so much fun to be around. She always claimed to hate dancing, but after a few drinks she was the 1st person on the dance floor and the last to leave. We obtained a little more evidence of this from Sarah’s long term friend Amy.
When Sarah was younger it was a long time tradition that her mom would take her and Amy to the Western fair. When the year came that they were able to go alone they also went to their first out door concert which was Tom Cochrane’s “Life is a Highway” tour. They began watching the concert in the bleachers’ until Sarah decided she wanted to get closer, so they jumped the wall and went closer to the stage. Not long after that it began to pour rain. Sarah started to dance in the mud then Amy joined in and they danced like that for the rest of the concert. By the end of it they were soaked from the rain and covered in mud.
Another adventure that Sarah and Amy was the year she first got her license and some how Sarah convinced her mother to lend us her Blue Mazda to go camping. The trip should haven taken them an hour, but ended up taking them 2 and half hours. When they arrived it was not what they were expecting. It was a camp ground that was literally in the middle of a corn field, run by biker’s who had a carefree philosophy like hippies. But, they made the most of it by dancing to live bands playing in the campground until 5:00 in the morning.

It is not Liz and my intention to focus on the cancer, but we think it is important to recognize what Sarah’s journey has taught us over these last 3 years. From Sarah we learned a great deal about strength. People would always ask Sarah “How do you deal with it?” and her reply would always be the same: “You just do”. Her ability to be strong for not only herself, but also for her family and friends was a true testament to her inner strength. She made it so easy for all of us. If anything Sarah has taught us that everyone is strong and that you can face things you never thought possible. To doubt that you could face anything considering what she went through would be an injustice to her struggle against cancer. We owe it to ourselves more to know that we can get through almost anything.

Courage, like strength, Sarah had an abundance of. The courage to be weak, to be sad, to be happy, to be at peace and to find humor in even the most devastating of situations. A true test of courage is fighting a battle you know you may lose, but Sarah never wavered from her goal to live.

We learned about what friendship really means, that it is the little things, the big things, it’s about sticking with it even if you’re scared and sticking it out with someone you love because there is more going on than yourself.

We learned the importance of letting people in, and letting people let you in even if it is uncomfortable or a little disarming. It is so worth it.

Finally we learned the true meaning of devotion and unconditional true love. If anyone in this room has ever doubted that true love exists, it does in its purest form with Sarah and Derek.

We would like to thank Pat, John, and Bryan for loving Sarah so much. Pat we have cherished the time we’ve spent getting to know you over the past few months.
Derek your love for Sarah is truly an amazing blessing. Sarah was able to draw from your strength and courage. You were her hero as much as she was yours.

Finally we would like to thank Sarah for giving us the greatest gift of friendship. We simply love you and you will be greatly missed…


Love you Sarah xoxoxoxoxoxoxxo

Tuesday, June 12, 2007

Sarah Toller

February 7, 1977 - June 12, 2007

Sarah passed peacefully this morning with her mom and I by her side.
Now she rests, her love still radiating everywhere.

Saturday, June 02, 2007

June 2

Thanks for all the comments, I have read them and they are very touching.
Sarah's still fighting hard and has had miraculous periods of clarity, we've both said a lot of meaningful things to one another and for this I'm very grateful. Along with these moments of clarity are increasing episodes of delusion, confusion and hallucinations. These have become more prevalent over the last week. Its hard to see, handle and defuse. The disease in the brain is progressing but hopefully these symptoms will slow down since the latest flurry. She still assures me she's content and when resting is peaceful. The moments of clarity since the whole brain radiation will always be special, her(our) social worker says she's one of the special very few who are so strong and can regain so much function. To all her good friends, I've told her about of all your messages and e-mails, She knows she's loved and misses all. Most of the blog comments have also been read by Sarah, Thanks for all the support.
I'm really glad everyone understands how special Sarah is, I've truly never experienced such love, power and determination and her beauty remains, what a sight she is.

Wednesday, May 23, 2007

Sarah's in rough shape. She received a weeks worth of radiation to the head and a single dose to the R. breast. No response. The last 2 days she's been in a drug induced sleep, the days previous to this involved periods of intense anxiety and pain, with few words to express herself. It' s so hard to write this next line. After fighting like no other, Sarah's going to die. Her Dr. thinks a few short days to a few short weeks. She' s resting peacefully, but she must be in agony. I just hope she's OK and finds some long awaited peace and dosen't have to hear the C-word anymore, Where ever this place is, it will be much better off with Sarah in it. She's got lots more love to spread.

Safe travels my love.


Thursday, May 10, 2007

another update by Derek

I'll just write a quick update now and I'll write more soon.

Sarah says hello to all and really wishes she could be the one giving the update.

Sarah's been in hospital for almost 4 weeks and during that time she's had surgery to remove the very large tumors that had broken through the skin on her arm and shoulder, they had become very infected. She has battled through some kidney problems and was almost put on dialysis (kidneys working perfectly again). She's finally started to feel better the last 3 or 4 days and there's also been an increase in her caloric intake and a slight movement towards solid food. All that said she received some devastating news 2 days ago, the cancer has moved into her brain, 2 small metastasises were found on a ct scan(Radiation is still a good possibility, still waiting to talk to the radiologist(s) . We're still fighting, yet understand what this means. Its a very sad time, but we live each moment, laughing and crying, and kissing and snuggling. Sarah's holding on tight and we'll make this road last and last, life is so sad but it's so good, everyday with my hero is a splendid one. Thanks for everybody's praying, and well wishes.

Right now we're focused on coming home. I'll update soon


Wednesday, March 28, 2007

Update by Derek

As you will all probably notice this is not Sarah's writing. This is her husband's attempt at an update, sorry no descriptive flowing prose, but blunt mis-spelled statements.

Sarah's week in Buffalo(mar 18-24) had it's ups and it's downs. Starting with the positive, she received 13 of 14 IL-2 doses, she showed an unbelievable ability to cope with a treatment that most can't handle very well. This is the reason why we're there, so we'll take as much as we can get. So understandably those kind of numbers mean swallowing some harsher, more prolonged side effects. These side effects appear and took there toll and some still continue to linger, but I'm happy to say since today(mar 28th) Sarah is feeling kinda normal, this is after a 7 day period of no solid food, a week and a half in bed with scary thoughts, hallucinations and confused states/dreams that melded with reality. It was really tough on her, questioning her own thoughts and working through them , separating real and the imagined. She did it, again just like last recovery, fought her mind/drug and won again.

She still can not keep her food down and suffers from out of the blue massive headaches, but she’s speaks like her lovely self again, laughs, cries and lives like her self again. Her independence is on the horizon, her walking has improved and energy level is way better, still low but on the mend. I know she's had enough of my version of mothering and needs a break.

Sarah's one in a million, so strong and special it's beyond words, I realize a lot of you only know her through her blog, and this represents her well, but let me tell ya the world has far too few people with Sarah’s love, thoughtfulness and strength. Keep thinking of Sarah, she's a fighter and in the midst of a battle.


Thursday, March 15, 2007

Rest In Peace, My Strength, My Angel

Heather died. She actually died. Heather was my strength, I felt like she took me under her wing and encouraged me along the path. I knew she was doing bad. She lived in Buffalo and I was going yo call her on the day she died, to see if somehow I might visit with her, even though she was bed ridden. But, I chickened out. I was afraid she'd be too sick, that we wouldn't be able to coordinate it anyway with me being in hospital. So, I guess her funeral must have been while I was in Buffalo. If I had known, I would have gone in a heartbeat.

I loved Heather, her wit, her will, her determination, and her constant ability to put her own woes aside and offer advice and an ear, I spoke with her once, around US Thanksgiving. She said we were kindred spirits and I believe it. But Heather was 1000 times stronger and braver than I. Only 39 with 4 kids and a hubby, struggling financially and then with the beast. She was diagnosed the same day she gave birth to her last child not even 2 years ago. They noticed a suspicious mole on her leg as she was birthing. Unbelievably unfair. But, now she is a soaring angel, and as she was a huge part of my strength in life, she will remain so in death. I know that if Heather could do this thing, so can I.

Pleeeeease take time to read Heather's blog from start (July) to finish. I guarantee you will never be so uplifted and inspired.

RIP March 2, 2007

Back from round 1

Jesus, what can I say? I feel like utter shit, I'm not gonna lie, but coming back to my blog and reading all your messages of encouragement bring tears to my eyes (my mom's helping out at home right now so I'm trying to hide the sobs-- not time for the folks to know about this place yet) as I am reminded that soooo many angels are out there pulling and praying for me.

It's been so hard. IL-2 was better than expected the first week as some had told me it would be. My only symptoms were utter lethargy and drowsiness. None of the horrors I had read about. The torture was laying in that same bed, staring at that same wall, too mentally and physically tired to read magazines or play a game. I slept just to pass time. Sometimes I watched t.v. but most of the time the sound and action was too much for me to process so I kept it off. I feel shitty even complaining about that when people all over the world have hospital stays of months on end. But, it's how I felt, and I thought all the time of others who suffer the gambit of symptoms and I think I would have thrown myself out the window. I'm not that strong.

I rec'd 9 out of the maximum of 14 doses possible in the week. They monitor you constantly to decide how much IL-2 you can take. Apparently I took more doses than anyone else that week so yay for me. I hope that means it'll work better, but then I also hope it works for everyone.

The real shittiness started at home. We left Buffalo Saturday morning and I have like 3 memories between then an Monday. Apparently the same male homecare nurse came to change my dressings (2 tumours on my arm and shoulder have raise thru the skin and are "draining"--yes, the site is horror flick worthy and it makes me feel disgusting times ten) on Sat, Sun & Mon, but I had no recollection of the first two visits so it was like meeting a new person on Monday. Monday was a bad day cuz that's when I started to get more lucid and aware of things, yet I was hallucinating a bit, but aware at the same time so I thought I was going crazy. That has been the worst part. When you think you may be crazy for the rest of your life, there are no words to describe the terror. One of my thoughts was that myself, Derek, my mom, my doctors were all characters in a board game and the IL-2 was one of the punishments. I so desperately wanted the game to end but there was no end. Yet, I was aware this made no sense and I must be hallucinating. Stuff like that was happening, along with a remarkable loss of speech, right hand strength (frustrating not being able to hold a glass with left or right hand!). It's Thursday now and I'm mainly just tired all the time, nauseous or constipated, headachy or dizzy, can't get comfy in bed cuz of my fat ass lymphedema arm and hand that can't be controlled anymore because of tumours blocking passage.... whaaa, whaaa, whaaa. Just general malaise and the depression is slipping in more too. It helps so much to hear your cheers and experiences though.

Nope, not all brave and stoic at all. I'm scared shitless to go back for round 2 on Monday. I was hoping to have a reprieve at home, but instead the symptoms started after I left. How many times have I cried, "I can't go back!"? Too many to count. But I will. Because so many others have and if they can do it, I can. And I can't refuse my best shot of a cure or at least a remission. How could I walk away from that? But I so fucking want to. I am scared out of my wits. I need to get back into focusing on the good and on the present. But my books that hep so much are hard to read when I'm so tired and spinny. Derek offered to read to me, but the poor kid's life revolves around taking care of me now. He does EVERYTHING around the house, helps bathe me, dress me, sometimes helps in the bathroom, feeds me, has become my secretary and makes sure I take my pills. If I don't sleep (like last night), then neither does he, 'cept he has to work the next day. I hate depending on him so much. He's only 32, life is not suppose to be this way. But, it just plain is.

On a superfantastical surreal note, unbeknownst to me, my coworkers held a fundraiser for us so we didn't have to worry about the unpaid time Derek would take off work to come to Buffalo. They raised something like $7000! Oh, my god did I cry. My friend who organized told me stories like of this one little girl of a coworker who when told of our situation told her mom she wanted to give all the money in her savings account to "that guy who has to take his sick wife to Buffalo". Her mom pointed out that was all her savings from birthdays and for education so maybe checking out the piggy bank would be more appropriate. She poured all the changed on the bed and when asked how much she wanted to give she said, "Well, I'm six so I think I wanna give six dollars!". All that for us!!!! It is so bizarre to be the reason for a fundraiser, but the stories like that just make me want to fight more! There are too may people who care and I sooooooooo don't want to be a tragic story. Please God, give me strength.

love to everyone! I'll update again after next treatment when I feel up to it.

Thursday, March 01, 2007

Just Call Me the One-Handed Wonder

Tisk, tisk. With my memory I should be blogging more regularly. But, ya do what you can do, yo.
Is it actually March first? I don't like how time flies. Especially when I'm somewhat sidelined and unable to do as much as I'd like to do with my time. I hate saying it, but the last 2 months haven't consisted of much more than dragging myself out of bed between 10am-1pm, then plopping myself on the couch for the rest of the day to watch TV, read, make phone calls (usually related to medical or supportive care, meaning social work or group, that kinda thing). Up until the last 2 or 3 weeks, I was able to drive so I could take myself to this or that appointment but I've lost that independence now. For real excitement, I'd have over only a couple visitors a week (too much socializing drains me), watch DVD's on weekend nights with friends. All because of PAIN!

I don't know where exactly I got the idea that most cancer pain was manageable. Like so many other impressions I had about cancer until I was thrown into this life, I just recently realized that my impression, while not untrue, was a bit simplistic, or a bit black and white. My cancer pain can be managed, but not with a decent quality of life while I still feel like I can and should have a relatively normal lifestyle... going out for dinners, shopping for fun OR necessity (I wish I could go grocery shopping!) , having some drinky poos with friends. I feel mentally and physically ready for this, minus the pain.

Here's the stab at the heart: In order for my pain to be completely under control, I'd be a zombie!

I kept returning to the cancer centre saying, "This isn't working". So they'd up the doses as far as they could without nasty side effects occurring. It wasn't until a couple weeks ago that I go the nerve to ask what their goal was for me pain wise. In my head, I totally thought we were working to get me to the point I described above. But just in case, I didn't ask. Their answer broke my heart (how many times can a heart get broken?). They said they wanted to get me into a "comfortable resting state", which I took to mean comfy on the couch. And the truth was, I was pretty much comfortable on the couch in certain strategic positions. But I wasn't ready for that. That's not my life, not now. Beleive it or not, I still think of myself as a healthy person! Call me sick, and I think, "But I don't have a cold."

So, along came the CADD pump this week which is a rectangular box, about 9x2 inches and weighs like 2lbs. Part of the contraption holds my medication (Dilaudid) which flows through a tiny plastic tube, through a small needle, and into my subq tissue, luckily not a vein cuz that would hurt more since the needle and meds are replaced weekly. The initial dosing did nada but SHABAMMM! the second dose helps a lot!

I'm not nearly pain free, but I can handle it better and I'm grateful for the amount of "life" I've been given back. It's hard to explain but for 2 months everyday I wondered how many more days I could take. So, the day by day mentally is what got me by as well as trying to focus on what I did have and could do rather than what I didn't or couldn't. Must admit that it crossed my mind a few times how many bottles of different narcotics were sitting at my bedside. Had it been another person, a person without so much support, a person who knows not how and when to seek professional help, a person in a deep depression, those pills could easily have done a person in, not the cancer. I guess no one tracks this stuff? .....................................................

What the hell, I typed left hand only for 3 hrs. about this that and the other thing. I erased it!!!!! I can't repeat it, I don't want to. Well, now you know I can't use my right hand at all anymore, not only with the bionic arm! That's frustrating for sooooo many reasons, one being that blogging is a bitch now. But, much better than handwriting so I won't wallow in that long.

The only thing I have to say is that where my entry left off, it seemed like I was pain free. Nope, not at all. The way I went on to decribe it was like this: Instead of having 1 position be comfy on the couch, there are now several. I can do a few errands in a row if someone drives and holds doors and bags, but that gets me into a high level of pain which subsides after a while when I rest. So it's all about balacing need or desire with how much pain I'm willing to take. But if I pushed it past a few errands I'd likely end up in emerge again. So, my enthusiasm is all relative, but to me, right now, it makes a huuuuge difference in my quality of life.

Too bad so much got erased because I can only squeeze in one more entry before I start IL-2 in Buffalo on Monday. But we're leaving Sunday since I have to be at the hospital at the crack of dawn. I want to write about my feelings going into this treatment, many of which I've switched off for a while just so I can keep it together and get the most out of my days in waiting.

Blogging one handed is going to be a challenge going forward. Everything's a challenge these days. But I can handle 'em. One after the other, they keep rollin' in and the person I see in the mirror is not the one I knew 2.5 years ago, except for on the surface, and I'm certainly not talking physical surface. I'm different now. I just am.

Wednesday, February 14, 2007

It's Valentine's Day

We don't do anything extravagant for v-day, but we do acknowledge it most years. Valentine's day happens many times during the year at our house, any time one of us does something special for the other is romantic enough for this gal. I'm not the diamond necklace and roses kinda gal.

I had literally forgotten about v-day until last night. Or more accurately, I'd remember and panic, then forget again. In bed last night Derek mentioned it was v-day tomorrow and I was like, holy shit, I didn't do anything for you, I forgot with everything that's been going on... I never seem to know what day it is. He said, No worries, I didn't get anything for you either. So, this morning D-man left for work at 8:50am and I rolled out of bed at 10:30am to find a cute basket filled with vegan/organic chocolates of different varieties, my favourite tea and another tea that looks yummalicious and some natural soaps. Aw, what a sneaky little sweetheart.

My plan is to make some vegan cupcakes with read or pink hearts on top. I've sent my dad out to get the icing and I'm nervous what he'll come home with. We are also out of sugar so I'm waiting for him to get back home this afternoon so I can borrow sugar. No, he doesn't exactly live with us, I think I've mentioned before that we own a duplex (a 100 year old house converted into two roughly 900sqf 2 bedroom apartments) and he rents one apartment from us. And we live in the bigger one. So anyway, I hope I can finish these cuppy-cakes b/4 Derek gets home. It's going to be quite the feat considering how much pain I've been in, which makes the cupcakes extra special because he'll know how painful it was to make them, but he deserves it and when there's a will, there's a way. I don't necessarily believe that cliche but in this particular circumstance, it works!

So,I'm back blogging. With one hand mind you. That equals slow blogging. Derek got a great deal on a used laptop for my birthday on Feb.7th and I just called today to get the wireless connection and am so excited at the prospect of lying on the couch or in bed catching up on emails and stuff. Sitting at the desktop is painful for me in my back and neck, and if I try using my right hand, even with my bionic arm, I get terrible pain in my arm cuz I have to reach up too far for the keyboard.

Ya, so my 30th birthday was on the 7th. It was definitely different than I had pictured it growing up. Like most people, I think, I thought of it as this huge milestone in life, worth celebrating with a huge party. And then behind closed doors I thought I'd wrestle with all the feelings that I thought go along with this milestone. You know, like feeling old and needing to assess where my life was at and if I had achieved everything I had wanted to achieve in my dream or illusion of of what my life was suppose to be like by age 30. I actually did pretty well on the checklist. That sort of unwritten checklist I think lots of people share, unless I'm just crazy. The checklist that meant you were truly a self-sufficient adult. I wanted to get there, some people avoid it like the plague and want to remain free of responsibility, living sort of free of commitment, never really aging mentally. But I had that checklist and it involved working towards and hopefully achieving the following things by the time I was 30:

  • Finish degree and commit to life-long learning-- I don't want to remain stagnant
  • Find a job that I didn't hate and that would allow me to be self-sufficient, with benefits
  • Find a quality partner. I never wanted to get married and I don't really believe that humans need to commit to each other for life. This is sort of like the Buddhist teaching of impernence: Everything changes and if we can't accept that things change or go away then that leads to suffering. How can we possibly know that 20 years from now we'll want to be with the same person? People develop and expand at different speeds. Why commit to someone for life when this could lead to personal misery? Most people just get divorced these days or literally suffer through a platonic relationship for years because of this commitment infront of God. Of course there are many exceptions and this is merely my opinion. But as we both saw it, we were on a journey together, a ride that we got on and couldn't know when the ride would end, if ever. Why not just go with the flow? Of course all the time hoping that our partnership would last our lifetimes. Neither of us have qualms about having chilren out of wedlock. And we had already made it 7 years when I realized we needed to get married. Derek thought I was joking. We got married because no one took us seriously when we said, This is my boy/girlfriend. They didn't know if we had only been together for 3 weeks so we had no right to speak on each others behalfs. Derek had no right to advocate for me in medical situations. Now he can. Doctors talk to him if I'm drousy etc., the take him seriously and allow him to speak on my behalf and make decisions. It came down to, we were ambivalent about marriage, so why not just do a very secular wedding and throw a backyard party. It was also a sneaky way to get ALL our friends across the country to be in the same place at the same time.
  • Buy a house
  • Have a baby

So, I did everything except have the baby, but it doesn't really matter because I have cancer. Yes, I'm blessed to have such comfort and security having long-term income protection and heath benefits. I'm so blessed to have the best husband in the world who friggin' does everything for me if I'm feeling shitty or in pain. He makes sure I'm comfy, cleans the house, literally comes home from work, asks me about my day, starts dinner, and fixes up the house before he gets to relax. It's not fair. But he says he doesn't mind, refuses my thanks and still showers me with kisses and caresses. I said the other day how sorry I was that we haven't made love in so long due to surgeries and pain and my hang-ups about being ugly with visible tumours and he said something like, "I don't care about that at all. We make love everyday in different ways. Sex is such a small part of what makes our relationship so please don't worry about that." Sorry if that was TMI but I wanted to document that for myself. See what a sweetie-pie he is? I'm sooo lucky! That doesn't mean we don't have spats once in a while, but it seems that when I'm sick or in pain he kicks it up a notch and we don't argue. Probably too cuz I don't have the energy to nag. I'm pretty darn lucky to have him. How could I possibly go through this without him? It would be truly horrific.

Woops, I went on a tangent. I'm trying to make a point and that is, I don't feel old, I feel too young to have cancer. Too young to have to face such torture and pain. So many people hit 30 and freak about the number's significance to them. I thought I was going to be like that, but since I was dx'd at 27 I have just begged the universe to let me live that long. It seemed so far into the future considering the terrible statistics that went along with my dx. Was I, could I, possibly make it to that marker? And I did! And instead of wanting to party about it (believe me, I was in no state to party anyway) I just kinda wanted to sit with it, be grateful for it. Derek made me a vegan chocolate cake and I got visits from friends and family with prezzies and flowers. It was perfect and I can't see it being any other way--low key is my new status. And ya know what? If I can do 3 years than I can do 3 more and keep running with it!. I'm back in cancer ass-kicking mode and this IL-2 will work for me!

In other cancer news:

  • Still waiting for my IL-2 date. I was so hoping it would be this Monday (19th) because I have had all the tests and scans done.
  • I'm worried that my scans weren't good and they are thinking about palliative alternatives. I hope hope hope that in the month since my last scan thing haven't drastically changed. Yes, I've called the doctor, talked to her nurse who had no idea London was taking care of things cuz the last thing she heard was that Toronto was doing all the paper work. She asked me if I had the results of the scans to which I said no and she said she'd talk to Dr. Bitch and call me back. That was yesterday afternoon. I'm going to harass her again as soon as I finish this entry. Edit to add: I got word today that I will get a letter in the mail tomorrow saying I have an appt. within 7 days for Buffalo. I think the letter will have the exact date. Woohoo!
  • We went to Ottawa this weekend (Fri-Mon) and stayed in a cute hotel called the Bostonian which had only suites with full kitchen-- I'm talkin' dishwasher too! And only $110/nigh at a km walk to the parliament buildings and many of the attractions Ottawa has to offer. We saved a lot of moola cooking our own food, and Granny, who lives in Ottawa paid for the suite as well as my dad. Very nice of them to allow us this mini vacation. We were concerned about my pain level but decided it would be "funner" to be in pain at a hotel then at home. Saturday I exceeded my expectations and was out and about doing the tourist thing a good part of the day. I was in pain the whole time but with breaks I was able to go on. Sunday though was a whole other story. I coudln't get comfortable during the night cuz now it is getting increasingly hard to even sleep on my left side cuz of pain. My left side was the only position I've been able to semi-sleep in for a month. By the morning I knew I was out of commission for the day, possibly b/c I over did it the previous day. Derek went exploring by himself for a few hours while I slept. At bed-time, I was in so much pain I was rolling around crying and being a total bitch because Derek wanted to help so bad but there was nothing he could do... I just wanted to try to find a position on my own. After about an hour of this I said, I'm going to emergency, I can't take this. So we took a cab to the hospital, I was triaged in like 30 seconds--it's amazing how fast you get in when you say "stage 4 cancer pain"... I'm thinking some dude out there with a broken leg waiting for 4 hours to see a doctor could be in just as much pain as me and I get in so fast? It's not fair, but as if I would speak up and risk losing my spot!-- Anyway, we decided that I would stay over night so I could get i.v. morphine every 1/2 to 1hr. (which, btw, just took the edge off enough to get a bit of st-eye for an hour or two at a time) and Derek would go back to the hotel and get a little sleep. This was at 3am mind you. It took so long because there was a trauma they had to take care of first. You should have seen Derek's eyes, they were so bloodshot cuz he was so tired, sitting in a regular office chair for 4 hrs. but all he cared about was me. God, I HATE doing this to him. But I'd be screwed without him. No one knows how to take care of me but him.
  • Obviously pain meds aren't working. Pain onc has been fiddling with my meds ever since they stopped working about 3 weeks ago? Nothing is working. Every 3-4 days we change something, double something. Nope, not good. Can't sleep, can't drive, can't cook, can barely get dressed, can't clean. How's that for quality of life? If what I'm on now doesn't work by tomorrow morning then I am likely going to some kind of drip. A tube will be inserted into me, attached to a little baggy that is programmed to regulate dosage. Not sure what drug. I don't like the idea of it just like I didn't like visible tumours on my body. I want to avoid looking like I have cancer so I don't have to identify with it. In my mind, I am a healthy person, healthier than most people, the doctors even refer to me as a "healthy girl" -- hey, now that I'm 30 should I insist on being called a healthy woman?-- except this physiological error happened, something that is not a part of who I am. I feel invaded and I feel it wasn't meant to happen. Ah, well, I must do whatever will make me comfortable until we annihilate this nasty, unwanted, disease from my body! I'll get over the bag within a few days I'm sure.
  • Tumours are taking over. No longer just on my right side, the cancer has made home in many different places and I feel a new tumour almost everyday. My left neck, my stomach, my upper groin area, my back, more on the right side. That was heavy news to swallow when I felt the first one in a place other than my right armpit, shoulder, arm or breast. Whatever though, I'm still fighting this beast down to the ground. I will be on the good side of the stats. Why the hell not? Now I just wish my medical "team" treated me like that was possible too.

I think that's it. The fact that I even wrote this is a sign of progress. But, it really ain't fun typing with one hand. My totally sincere apologies to any one I owe email responses to. I literally have only been logging on to the old 'puter once or twice a week and not for long b/c of pain so I try to respond to emails by earliest date. I think it'll be much better when the wireless laptop is hooked up sometime next week.

gotta go finish those cupcakes-- eek, the bottoms got slightly burned, but it's the thought that counts! I'm no Martha. Nor do I want to be.

Tuesday, February 06, 2007

It's not just a grandpa disease

I didn't know this brave young woman from B.C. but her mother has posted on another site that in her daughter's honour, she'd like to get her message out. Please take a moment to click the link below (Ceri's name) and listen to Ceri's message because even in death her voice is still strong and able to continue educating about skin cancer and the possible dangers of the sun.

R.I.P. Ceri Elizabeth Smith 1986-2007

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.

Thursday, December 14, 2006

Actually, It's December 21st when I posted this entry!

Edited to add: This is such a rambling incoherent mess. Not a reflection of my mind or how I feel, I just can't express my thoughts well. I started this entry on the 14th and saved it as a draft but didn't finish until I made myself tonight (21st). Been soooo busy! Fun busy though.

The other day, as I told a story in my cancer support group, I was reminded that I have been meaning to tell this story in my blog for ages, lest I forget, but really, how could I ever forget this, even with my atrocious memory?

In early September 2004 I got out of the shower one morning and found a golfball sized lump in my armpit. The weather was warm and I was shaving the area frequently (unlike in the winter when I become a sasquatch). I didn't think much of it as I had no idea it could be such an ominous sign of serious disease, I attributed it to a "swollen gland" due to a terrible cold. When it didn't go away for a few days, they started me on antibiotics. When that didn't work, a long two weeks of back and forths between my GP and emerge started, trying to figure out what this thing was. No one ever mentioned the C word, I was blissfully unaware, I thought at worst it was a cyst. Anyway, that's not the story, just the background and if you've been reading my blog you already know that.

So one day while I was still in the dark as to what this lump was, I was sitting on the toilet, minding my own business (while doing my business!) when probably the most surreal, unexplicable thing happened. As clear as can possibly be, a voice said to me:

"Hopes and dreams are just an illusion, all we have is the present."

I'm sure it was a male voice, a voice that entranced me. It was in my head, or in my ear, but it wasn't from me, if that makes sense. I knew that someone was speaking to me, I knew that this was a message that I had to remember, but I didn't know what the hell it meant. When I finished my business I wrote the sentence in a notebook which I still have because I knew I wouldn't remember but somehow knew this was something so important, I had to remember.

Soon, it became so clear. And this message is what I have referred back to over and over through this journey with cancer. When I got the final verdict by phone, "The cells are highly suspicious for malignant melanoma. I'm sorry, sometimes bad things happen to good people", and processed what I had been told over the next few days, or maybe weeks, the message made sense to me.

Everything we hope for, every dream or goal, that vision in our heads of how we think and therefore expect our life will be (give or take a few setbacks) is an illusion. Suffering occurs when our dreams for the future are crushed, but these dreams were never real and never guaranteed anyway so mourning their loss and suffering over it is really really...silly.

This is a Buddhist teaching I believe, but at the time, I don't know that I was familiar with any Buddhist material really. Maybe I had read something to that effect and it was bubbling up sub-consciously but I don't think that exact phrasing is from any text. Correct me if I'm wrong. And even if this did bubble up from my unconsious mind, the timing was bizarre, and I didn't even "get" it at the time so what was my unconscious point?

When you get cancer with a bad prognosis, or any disease or life altering tradgedy strikes, the real suffering is in mourning the loss of what you believed your life would be. For me, that was the job and course I was taking, the house I wanted to buy, the kids I wanted to have, the travelling, the gray hair, the grandkids. Typical stuff. But I could see it all so clearly, and even though I knew there would be bumps in the road and life would challenge me and offer up unexpected paths, I just knew that everything would be ok. I've had some terrible things happen in my life and I knew that bad things did happen to good people. But because I so clearly understood that my job was to mother and I could visualize my life through the decades as if they already existed, I was pretty much convinced that I would live a long life, more or less how I thought it would be.

I was also just beginning to realize at the time that I was living for the future. I was somewhat stuck in the "Everything will be good when X happens", but then X would lead to Y and Y would lead to Z and so on. Not that I wasn't happy, but I was always looking towards the future (do! do! do!), when things would be better instead of truly embracing the present and living. And what I've discovered is that living isn't doing, living is being.

I've said many times since this cancer journey began that I've done more living in the past two years than I have in my entire life. This isn't because I've all the sudden had a lifetime of experiences, but because I've experienced and interpreted life in a different way, allowing me to take more of it in. I know, it sounds so cliche. But it is so true. I'm not going to ramble about what life feels like or looks likes now because I wouldn't know how to explain it. It is just richer now, I see and feel things all the time now that I only got glimses of before. I hate gettting all "spiritual", not because I'm not, but because "spirituality" has almost become a cheesy commodity in recent years and I don't want to be perceived as a total flake. My spirituality is deeply personal and I would feel almost violated if I shared that part of myself with strangers.

All I will say is that something spoke to me that day. I don't know who and I don't care who, but it was nice of them. I don't believe I was suppose to "learn a lesson", I believe I was being comforted and reminded that life is now so I better not waste it wallowing in the "if onlys" and "why me's". Sure, I'm human and I do go there now and again, I especially did in the beginning of this disease, but when I go there, I have that phrase to remember, to shake me out of the self-pity. Hopes and dreams are just an illusion. I don't want to DO, I want to BE. That is living in the present. Being ok with being instead of doing doing doing. All we have is the present.

Cancer update: A few days after my last surgery (Dec 5th) I found a pea size lump in my right breast. In October one of the lumps I had removed was from my breast so I knew the melanoma had already spread there but I wasn't planning on finding more so soon. I guess I wasn't as thorough on my lump check pre-surgery as I thought I was, I think I totally ignored the boobs! I see my onc on January 8th for a follow-up and knew there was no way he'called the offid roll me into surgery so soon after my last one to take one sub-q out so I'm just waiting. If it comes out, my bet is is late January to February. I don't think about it besides that in the past couple days I feel a little pressure in the area because it is growing and now probably the size of a large grape. It grows so fast! It's amazing how when I found this lump, I didn't even react. My heart didn't flutter, my stomach didn't jump. It was more just like, ok, been there, done that, whatever. I can't be bothered to get worked up over these tumours all the sudden. They aren't specifically life-threatening and while I would like a break forever, it ain't happening at the moment so I've got to march forward and march through. Life will go on despite these little fuckers in my tissue. I guess because the sky hasn't dropped, my experience with these tumours has been ok, despite their overall significance and ominous meaning.

Thank you to everyone who introduced themselves. It was so nice to "meet" you. Your energy and spirits have and will help me get through this. It is so touching to know that so many people care. Having this place to vent is truly therapeutic. I kind of feel like I am giving away some of my worries, letting others carry some of the weight by sharing myself with virtual others in this way. Kinda cool.

Thursday, December 07, 2006

Curious, quite like George

So, you all know about me. I am so curious to "meet" all you cyber lurkers reading this blog. I get about 40-60 hits a day on this site (nothing compared to the 1-2 million gets!) and some of you I know IRL (in real life) and some of you I know from other message boards, and some of you have been sweet and courageous enough to introduce yourselves, but who are the rest of you?

This is your chance to come out of hiding. If you want to remain anonymous, that's cool, but just tell me a wee bit about yourself, like where you're from, if you have a similar story, or if you collect pet rocks. Just click on "comment" at the end of this entry and press "anonymous" if you aren't registered with

I know most of you are from the States, followed closely by my fellow Canadians, then I get hists from the Netherlands (shout out Janette!) and the UK, sometimes Africa and Asia, but that's all I know about you! Can't blame me for being curious. Indulge me. I dare ya!

I'll start by telling you the latest about me. I had surgery on Tuesday to remove that area that they told me was likely a seroma from past surgeries in the same location. WRONG! It was a tooma, small plum size like I said, with a small almond size one beside it. I thought I found something on my shoulder too the day before the surgery so I called the secretary to let the surgeon know, see if he wanted to bring an ultra sound into the OR. That didn't happen so on the OR bed I had to decide if I wanted him to cut into me not knowing if there was anything bad there or not.

The surgeon's comment was that, "You are usually right about these things", which isn't really true. I'm sometimes right, sometimes paranoid. So, I had him cut in, just cuz it doesn't really hurt afterwards, and my shoulder, arm, armpit are so butchered already, what's another scar? Turns out he didn't find anything. Good. I'd rather know NOW then wait and watch and worry, especially over Christmas.

So, I will still be ship shape for Christmas unless shit hits the fan, but lets be optimistic. It's unlikely shit will hit the fan between now and New Years, but I also know the reality from seeing how fast things have changed for some of my online melanoma friends. I know I am not exempt from this. I hope, but I am no more special or deserving then these wonderful people. We are all the same, just trying to get by, just hoping we will be on the good side of the stats. And we hope for each other.

Friday, December 01, 2006

I'm an old pro at this

Disclaimer: Spell check isn't working again and I'm too tired to re-read my post. That's been the case with most of posts actually.

Well, I got a small break from surgeries, if not cancer altogether. My supposed seroma seems to be melanoma. The lump has grown from almond size to, wait, let me feel it....small plum size, in 3 weeks. It grew from nothing (my sugery Oct 3rd cleared out that area) to small plum size in 2 months. My melanoma grows fast. Too fast for my liking, but I have no control over it. There is also a smaller lump, let's call it peanut size since we're on a food theme, right underneath it, hiding beneath my drain scar from one of my Oct surgeries. Derek and I went on a lump hunt--not quite as fun as an Easter egg hunt--last night and found nothing else so I'm happy about that. The other thing to be happy for is that my surgery is this Tuesday! Man, the service just gets faster and faster at the my cancer centre. I was in the right place at the right time, they had a hole to fill in the OR schedule so they stuck me in. I'll be hunky dory for the Christmas party we're hosting at home for friends on the 22nd as well as Christmas and New Years unless something crazy happens so all is well.

Got my path report back from the Nov.2nd surgery. There were 6 lumps taken out. One was not melanoma but plain old fatty tissue. To my surprise, the small lump in my breast was melanoma. Not the most common place for mm (malignant melanoma) to spread, but it does happen. Now I can say I have had the exact same procedures as most early stage breast cancer patients: lumpectomy, lymphnode dissection, radiation with commonly resulting lymphedema, just the procedures aren't in the same order! So, including the 2 masses that will be removed on Tuesday, that is 14 tumours removed in 2 months. Shitacular! Ok, Sarah, focus on the positive. If you were in a third world country you would be dead by now and none of them would have been removed. My body has kept this disease out of my organs for over 11 years. I know it can continue to do it for many many more! I have too much to live for and I love this life too much to move on just yet. UNIVERSE, DO YOU GET THE MESSAGE?!!!!

In non-cancer news: I went back to the school and it was much better. The woman, lets call her Doris, seemed somewhat more together. I haven't decided if that's because she had a cold last week and it made her brain foggy (too many antihistamines?) or if it's because the kids were busy making Christmas cards for some elderly adults in the community so she didn't need to talk much or keep the kids' attention. I wasn't paying much attention either to what she was doing because I was occupied touring around checking on how everybody was coming along and helping out with spelling, so it could be that I just didn't notice if she was still out to lunch.

Anyway, it went well and I really enjoyed the time around all the kiddos, watching them be creative and work as team. It's so funny to watch the personalities come out, the bossy kid, the whiner, the tattle-tale, the peace-maker etc. I wondered on the way home why I didn't become an elementary school teacher.Then I remembered-- I only got a 3 year degree instead of 4 year and I cornered myself by taking a major that I hated (english lit.) and a minor (psychology) that I liked but to turn it into a major and continue on with my 4th year, I would have had to take more science oriented psych classes and Sarah doesn't do science. I sucked at it all through elementary and highschool. I also had a fear that I would have to sing. Yup, like, la la la, sing. Don't all elementary teachers break out into song for class "fun"? At the very least around Christmas they make their classes sing carols. That' s what it was like when I went to school anyway and I used to think that I would be forced to sing with my class if I was a primary teacher. I'm not a great singer. That's why I became a tax auditor.

Well, it's Friday and I have a wild night of making some kind of yummy baked treat and watching What Not To Wear planned so I better get to it! Happy weekend to whoever is reading.