Inspiration and Hope

Karen Velasquez is a member of MPIP and gives all us melanoma warriors hope. She was diagnosed stage 4 ten years ago today! Beating the statistics to the ground. While she isn't NED, somehow her tumours have been kept in check by treatments and her body and have not been fatal. Karen has been an outspoken melanoma activist, warning people of the dangers of the sun and to be aware of any changes on their skin, even appearing this year on the Dr. Phil show to warn people about the dangers of tanning beds. She is a true inspiration.

Here is some of her history in her own words taken from her MPIP Patnet:

"I was dx in 1992 with the primary mole on my back, clarks level 3. I
had WLE and was told everything was OK.
In Oct of 1996, I was dx stage IV with mets to my jawbone, lymph
system (32 tumors) and spots on my liver. I was treated at The
National Cancer institute with high dose IL2 with GP100 Vaccine as
well as the Flowpox vaccine. I did nine rounds of IL2/vaccine combo
and all the disease went away with the exception of the jawbone, I had
my jaw removed and reconstructed. My NED time lasted 2 years. Since
that time I have not had any other chemical treatment, but have had 4
additional surgeries for lymph tumors, and had radiation to a bone
marrow met to my left femur. This disease seems to have become more of
a chronic disease rather than a fatal one for me. The IL2/vaccine
combo seems to have slowed things down. I am scanned every three
months for follow up. I believe that this is the key to maintaining
long term survival. Without that constant monitoring, these tumors
would likely have become a bigger issue."

---------------------------------------------------------------------------------------------
Another inspirational person everyone in cyberspace should meet is Heather. Heather has not posted on her blog in 2 weeks and I, as well as everyone at MPIP are very concerned. I'm not a prayer (prayerer? huh?) but I do hope she is ok. I'm so worried. Heather, if you are reading this, we are all thinking of you!!

http://livingwithmelanoma.blogspot.com/

---------------------------------------------------------------------------------------------

I have surgery on Thursday to remove the tumour my surgeon missed. Just as well he missed it because I just found 2 more curious lumps on my upper arm. Damn. Hopefully he'll take those out too. It just comes out of nowhere. I can't believe how fast my tumours grow. Whatever.

On a brighter note, my pain seems to be under pretty good control with the Methadone and Percocets and my mood is good too besides the frustration and anger towards the medical community right now.

And, on an even brighter note, my beautiful fur-babies Misty (brown) and Mojo (B&W) make me smile and warm my heart every time they are near (except when they scratch the couch and whine for food before the alarm goes off in the morning!).

Cracked out

Me a couple weeks ago when I was blasted from too many pain narcotics. Those eyes say it all. Luckily we've got the medication figured out for the most part (still in pain sometimes though) so I don't look like a total junkie anymore!

I complain too much

Thanks for standing by.

Ultrasound today. Confirmed tooma. They missed one! Right in the area the gutted. Good lord. Scheduled for another surgery on Nov. 3rd. That's 4 surgeries in exactly 1 month. Big oops. Who do I trust? Why is everyone so incompetent? I feel like I just complain and complain, but it's not me right? Everyone else seems to be fucking up.

Here's the list of fuck-ups:

1996: Mole from my back removed and biopsied. Removed because I didn't like it, esthetically. Pathology report said it was an atypical spitz nevus, which is a benign kind of mole. As you can see from the article I linked to "atypical spitz nevus" above, this kind of benign mole is often actually melanoma, misdiagnosed. I had no idea at the time (I was 18) and I went on merrily with my life for 9 years before I found that egg size lump in my armpit in Sept 2004. Which by the way was the size of a softball by the time it was surgically removed a month later. I do feel lucky I got 9 years till my recurrence though... this is unusual as most people will recur within 2 years.

Geez, how that would have changed my life if I recurred at 20. Because in those 9 years I got a degree, I experienced living in Toronto for 5 years, I met some amazing people and made some good friends, I met Derek, I backpacked in Mexico (twice) and Guatemala with Derek, I got a decent job with the Ontario government for 3 years which led to a better job/career with the Ontario government which I just began as I talked about in a previous post. I grew up. But I digress...

2004: Adjuvant therapy (treatment after surgery) Interferon. I was not told that I had any other option than this drug (many doctors offer the option of doing nothing as Interferon is a controversial treatment option).

I should have been told of the controversy over Interferon. I should have been told that I would feel like crap for a year in exchange for an average recurrence free time of 12 months in people who are destined to recur. I was high risk for recurrence, but many people who are high risk don't recur whether or not they do this treatment. If you are going to recur, you will at some point but no one can predict who will and who won't. This I learned on my own, well into my treatment.

Apparently the latest study shows that Interferon helps approximately 9% of patients stay recurrence free. That was not the information available at the time I started. Anyway, knowing that now, I would have chosen Interferon anyway for that 9% chance. But, apparently I wasn't one of those 9% anyway. Cancer Care Ontario has a protocol for administering this drug and it states that oncs should talk to their patients about the pros and cons of this drug so they can decide for themselves if it is something they want to do. I was never given that option.

2004: Maybe I wasn't one of those 9% because the whole 10 months I was injecting myself with Interferon, I was on the wrong dose! I was on a lower dose than I should have been and I only found out 8 months into the treatment because I found on the internet the formula they use to calculate the dosage and realized mine was wrong!

By that time, I had switched medical oncologists. He said he has no idea why my previous onc would have prescribed me a lower dose but since I was almost done the treatment and there was no research/study to suggest that a lower dose wouldn't work, that I might as well just continue with the lower dose. You would think that the pharmacist or my new onc would have realized my dose was wrong. And if my old onc did it on purpose (which he did because I questioned him about it via email at his new job in Miami and his rationale was stupid and senseless!) he should have told me he wasn't giving me the full dose, at which point I would have questioned it. A patient should be informed of these decisions, dontcha think?

Dec 2004: I was in the chemo suite, hooked up to my i.v. drip of high-dose Interferon (I did this every weekday for a month before I started the 10 months of self injection at home) but waiting for my nurse to start the drip. Another nurse (luckily) walked by, looked at the bag hooked up to my i.v. , looked at me, and whispered to my nurse that that wasn't my name on the bag and rolled her eyes at her. My nurse swiftly unhooked that bag and replaced it with a bag that had my name on it. I was this close (holding thumb and index finger an inch apart) to being administered someone else's chemo drug! How does that happen?!!!!! Very frightening, who knows what would have happened to me.

That I believe was the last fuck-up before the shenanigans of this past summer and fall started. When you tally it all up, it seems rather unbelievable. It gets frustrating, especially when it's different doctors and nurses. I am just feeling like I can't trust anything anyone says or does, when I always held doctors on a pedestal. Nope, they are just human, and they make mistakes like everyone else. But, the difference is when they make mistakes, they are dealing with peoples' lives.

But, alas, I can't complain too much, because at least they are trying and at least I am getting some care. Millions of people around the world don't get any care for their diseases, yet my government is spending thousands and thousands of dollars on me, on a disease that they know is incurable at this point... but they try anyway! They try to buy time for me until there is a cure. Literally, they are buying time. Thank you Canadian tax payers!!!!

My Interferon alone cost about $30,000 Canadian, if I ever do end up going to Buffalo for IL-2, this treatment costs the government $250,000 for only a 5% chance it will give me a long remission. Not to mention the hundreds of free doctors visits, scans, ultrasounds, blood tests etc etc etc. For this, I have to feel blessed. People die everyday in pain and agony because there are no treatments like mine, there are no pain medications, and if there are they certainly can't afford them in third world countries. I can't forget this. When I complain, I must remember how really lucky I am. Gosh, for so many reasons, I really am very very lucky. And most of you reading this are too. Don't forget that and don't take what you have for granted.

Twilight Zone

My surgery in London was a great success by all accounts. My dear London surgeon-- who you just have to like, he is so jovial and genuinely caring-- reported to my parents and Derek in the waiting room right after the surgery that they got everything out and that it was no problem.

He had no idea why Toronto wouldn't take them out, especially in someone young and otherwise healthy like me. We were happy, I was happy. Even though I knew that my journey with melanoma was statistically likely not over, I just felt lighter knowing it was all out and that there was always hope it wouldn't come back. I was discharged from the hospital that day, and back at home helping (a teeny bit) with supper that evening. Besides some arm pain, I felt surprisingly good. Anesthetic and Percocets don't seem to effect me like other people.

Friday afternoon, the day after the surgery, a home care nurse came to visit, empty my drain, and change my bandages. I took the bandage-free opportunity to poke around and was stunned to find a lump, about the size of a dried apricot, right in the area that supposedly gutted--sorta between my armpit and boob. Ok, really, I wasn't stunned. I was not surprised at all. It was more kinda like, "Of course this is happening. Mistakes always happen with me. This sucks." I didn't freak out, I called the surgeon's secretary to see if I could get a clinic appointment with the surgeon on Monday. She didn't call me back, but in her defense, I called only a half hour before she left for the day.

First thing today (Monday morning) I called again. The secretary answered and got me in for 10am when I explained what happened. When I met with the surgeon, he first said, oh, it must be a seroma. But then when he felt the mass I could see he was confused and concerned. He babbled about how he couldn't believe they could have missed anything. They marked that whole area, they dug in that area...

He took out a syringe to see if he could drain fluid, hoping it was a seroma or cyst... something other than melanoma. The syringe didn't draw any fluid. Oh, oh. Possibly big boo boo. I can't be mad at this guy because he is just so nice and personable and I really really like him! And he just seems to care so much about me. He is booking me for an ultrasound to determine what this is, and if it is a missed tumour I'll be in for surgery again and he will feel like a big incompetent goof.

I know mistakes happen but geez, I'm tired of them happening to me. There are many more that have happened in this two year journey-- things that are just plain crazy which I haven't talked about here as this blog only began in May. It is surreal to think this mistake could have happened as they had a the surgeon, residents, an ultra sound technician and a radiologist... this was an ultrasound guided operation and they went over my whole arm, back, chest, axilla with the ultrasound looking for tumours. And this mass is literally millimeters from where they excised! He didn't deny that it was possible, but seemed very mystified as to how. He said "bigger mistakes have happened, as you know, because they keep happening to you. This really sucks."

He's right. It does really suck. It sucks so much that I feel like I'm in an alternate reality. I feel like I've entered the twilight zone.

Standby.

Take this Oprah!

I always knew I was meant to be a mother. Ok, not always, but since my early 20s. Since that time in most peoples' lives that they begin to question their place in the world, what they will contribute to this planet, their raison d'etre.

When I was searching for my purpose, for what I wanted to do with my life and how I could better the planet, I found myself frustrated by the fact I had no desire to contribute to a "cause". No desire to be an environmental activist or advocate for the poor. I've never been overly concerned with those macro issues, interested, but not concerned enough to really get involved in anything like that on a large scale. I never wanted to save the world and I felt guilty about that.

A deep longing to be a mother had overcome me during that time (and still now, although I am trying hard to let it go), a desire so deep that I literally ached in my uterus sometimes and had to preach at myself to use protection because I hadn't finished school or started my career. I would (and shamefully/painfully still do when I'm weak) walk through baby departments in stores and pick out in my mind clothes, furniture, accessories for my future child. I'd watch those birth story shows on reality tv and fantasize that it was me. I knew my time would come.

After some time and reflection I realized that I was put on this earth to be a mother. My purpose was not to affect change on this planet on any kind of macro level, it was to love and raise another human being pure and simple. Perhaps to love and raise a human being that would go on to make bigger changes in the world. But for me, I just knew my job was at home. In this life, I was to be a kind, decent, and caring person in my day to day life, and affect just the people around me in a better way. If we all could just commit to being kind in our daily lives, then there would be no war. That was my commitment to the world, and my purpose was to raise another human being who would learn the same compassion and pass it on.

This was a spiritual realization. I believed in my path, almost like it came to me from God, the Universe, whatever you want to call it. I also believed, on this same level, that I would have a long life, sure there would be pain and suffering, and there was, but I just knew I was meant to live a long full life, raise children, and make the world a better place by being a good, compassionate person in my daily life.

So now, I question my every thought and belief. What is the point in pursuing spirituality or faith when the messages you believed came from a higher source turned out to be mere fabicrations of my mind. Or perhaps this was to be my path, but things such as cancer and illness are out of the scope of God's control? A physiological accident happened, it was discovered at too late a stage for treatment to be effective, and now my path has changed?

There is no point in searching for meaning in all this because I can't trust the meaning I find. Gah! I don't know what my point is. Nothing too brilliant. I guess I'm just having a pity party and whining that life isn't fair. Why do people who don't even want kids get accidentally pregnant, or people who are ambivalent but just have babies because they want someone to take care of them when they're old get pregnant, while women who really want kids suffer from infertility or illness? I guess I just want to scream: Yes, bad things happen to good people! Good things happen to bad people! There is such thing as being lucky and unlucky, and a lot of what happens in this life is absolutely random! Take that Oprah!

I'm just so tired of feeling like this is my fault or people implying that I can change it with visualization or positive thinking. Let me see you cure your next cold with positive thinking, and let me see you cure your next bout of food poisoning by visualizing an army of white blood cells attacking the bacteria! That would never occur to these people, but somehow they think that cancer is different? Ya, it's different, it is a hell of a lot more serious, powerful, sneaky and deadly! It is also incurable at late stages.

Most people that are cured were lucky enough to have the cancer discovered at an early stage. Plain and simple. There are 4 stages of cancer, each stage tells you how far the cancer has spread from the primary location. 90% of breast cancer patients are cured. Same with melanoma. That is because almost 90% get the cancer cut out surgically at stage 1 or 2. They had some sign of the cancer early on in the disease and got it removed before it spread. The people that die are almost all (there are exceptions to the rule) comprised of people who were unfortunate in that their disease wasn't discovered early because there were no symptoms, or they were misdiagnosed, or they ignored the symptoms until stage 3 or 4.

When you find out if someone has cancer, find out what stage they are to know how serious it is and how likely they are to survive. All cancer diagnoses are not equal, as our media would have us believe. A lot of the "warriors" and "survivors" that we see on tv, I've mentioned Sheryl Crow before, we are led to believe survived because of sheer determination, positivity and strength of character. Nope, I dare say, they survived because they had itty bitty cancers in situ that have less than a 10% chance of spreading! Then they sometimes go through radiation or chemo on top of surgery just to make sure that the cancer doesn't come back.
Sure, the treatment sucks and they were scared, and lives changed forever. But the media makes them out to be these rays of hope and living testaments to the power of will and determination, when in fact, they were just damn lucky. The media perpetuates the myth that cancer can be beaten with positive thinking by not presenting us with the facts of the disease.

Lance Armstrong. Here is a lucky guy. Sure, his testicular cancer spread to his lungs and brain making him a stage 4 cancer patient, but wouldn't ya know it, Lance Armstrong happened to get one of the few cancers that are curable at stage 4! Even with metastases to the brain, our beloved Lance STILL had a 50% chance of surviving long term!Lance was lucky that only a few years before his diagnosis an effective chemotherapy agent was discovered to cure many cases of advanced testicular cancer! When breast or melanoma cancers spread to the brain one has less than a 5% chance of surviving five years because there is no cure for stage 4 of these diseases. What Lance had to go through to get cured was horrifying, but it was no miracle that he survived. And it wasn't because he was some kind of super human, a pillar of strength and determination. It wasn't because, as he says, he just refused to die. It was because he called heads and that's where the coin landed.

He had a 50-50 shot at his very worst. My cancer hasn't spread to any organs and I have way less than a 50-50 shot at survival because there are no effective treatments yet. Lance Armstrong didn't survive because he is a good person, a strong person or because he wanted to live more than anyone else does. His got dealt a good last hand.

Dana Reeve died of lung cancer, only months after she was diagnosed, as most lung cancer patients do because symptoms do not present until a later stage, when it is uncurable. Some suggested that she unconsciously just wanted to be with her late husband, Christopher Reeve, or that she brought it on herself by not taking care of herself while tending to Chris for all those years. The cancer myth in reverse. The truth is that Linda, from all outward appearances, was full of light, life, and positivity. She exuded peace, happiness, and strength in any interview I ever saw with her. She was unlucky that cancer developed in her, and doubly unlucky that she got a cancer that had a bad prognosis from the beginning. Simple as that. Life is not always fair, bad things happen to good people for no reason that we can understand.

I'm just going with the flow. What will be, will be. I think that is a totally ok way to go about coping this illness. I hope for the best, but I am realistic. We hear those stories of surviors who beat all odds, and attribute it to something they did or thought, when we have no idea why they made it and no doctor would claim to know. For every person that was "healed" by a healer or some herbal concoction, there are thousands more that healed spontaneously on their own. Because it does happen. Most people who survive advanced cancer, don't do anything special. And most people that do do something special or extreme die. That's the truth, reality. I live in reality and I'm sick and tired of ignorant misinformed but well-meaning people offering their misguided advice because if I reject it, they conclude in their minds that I just don't care about myself enough to "fight". Bullshit.

------------------------------------------------------------------------------------------------

A recurring thought popped in my head today while I was getting marked by ultrasound for my upcoming surgery (oh, I haven't mentioned yet that my surgery to remove hopefully all the tumours in this Thursday, Oct 19th!). This whole process from beginning to now and I imagine forward has just been so damn interesting! Yes, quite horrifying, but I am always just so interested in how things play out, how things get done, the machines, the doctors, the process, the research.... I wouldn't wish this on anyone, but since it is me, I can often sort of step outside myself and watch what is unfolding as if it were a television docu-drama. Cancer, cancer treatment and support, and the emotional side of cancer (which I read a lot about) are fascinating subjects that I was 100% blind to before it became my reality. Through all the fear and pain and disfigurement, I am morbidly entertained by this whole process at times. Not in a funny ha ha sort of way, just in an awe inspspired, "that's neat!" kind of way. I suppose a psychologist would call that a coping mechanism. I'm a fan of coping mechanisms.

Ya, so my surgery is on Thursday. Apparently I'm not staying the night, but I'll really be surprised if I don't. If he actually does cut it all out, I'm going to have gashes in 2 places on my arm, my whole right armpit will be gutted and a huge area on my shoulder will be excised where there are 2 tumours. I'll definitely post pics. I'm going to have Frankenarm! Hey, that's the least of my worries. Well, come summer I'll be crying about it because I can't cover up the scars and my fat arm, but for the winter I'll pretty much be able to forget about it once the wounds heal.

As to IL-2 in Buffalo, it is a no go. If the tumours all come out, I can't have the chemo as I suspected. My onc in Toronto said "It'll just come back" when I told him I was having surgery here in London. I said, I know it probably will but we'll deal with it then. Seems logical to me to take it out, bang up my arm but give me some cancer free time. If it comes back, well, I'll just do IL-2 then. It's not like the chemo is a proven cure or anything, so why jump on it and be sick and miserable for weeks when I don't have to? And if it IL-2 doesn't work, then that will just lead into me trying every other chemo available which will make me sick for months and months. Why go down that road right now? I'd rather get cut up thank you.

Well, I guess I'll update after I get cut up, unless I feel inspired tomorrow. I still want to write about Hopes and dreams are just an illusion.... another time though.

Letting go of dreams

My life. How it has changed.

I just noticed that my employer has posted the position that I was working towards before I got blind-sided by this stupid disease. Back in Sept 2004 I had just begun taking the final accounting course I needed to compete for this position at my workplace. Then, a couple weeks later I was forced to drop out of the course due to my diagnosis and treatment. I was blissfully unaware of how much time I would in fact be off work, and in mid Oct 2004, a week after my first lymph node dissection, I competed for and won a competition for a job that was in direct line to me getting the position I really wanted, if only I got this course under my belt too.

I won the job, but I didn't start it until May 2006 after a year and a half of treatments and recovery. That's the good thing about working for the government and having a good union, they had to hold the position for me.

So, I started this job, one notch below the job I really want, in May 2006 and did it part time for 4 months up until this Sept when the other shoe dropped . I should add that in all my optimism, I had just re-enrolled for that course I need and got one week into it this time before having to drop out again, almost 2 years to the day that I first dropped out.

Now, I see in the newspaper that the position I had been wanting so bad, that I have taken courses for, that I have been groomed for, that I was envisioning as my "goal" is posted and it isn't going to be me filling it.

I have a hard time accepting that my life isn't actually going to go the way I had planned. I'm almost 30, just started my career, wanted babies, wanted grand babies. Wanted to travel more, to experience more, to get to that point in your 40s that women say you just stop caring what other people think and fully accept and know yourself. I was playing soccer right up until the time I was diagnosed. I scored a goal the week before! I was fit, I was active, I was so on top of my game in all aspects of my life. We had just downsized to a small apartment from a 3 bedroom house we were renting to save money for a downpayment. I was doing well in my part-time studies and getting praise at work. I was feeling so confident, sharp, on top of the world. I knew that even though there were setbacks here and there, that things would always be ok.

Someone else is going to take my job. Everyone else gets to lead the life I wanted to live. I know that's not true, but in my daily life it is. I'm the sick one. I'm that girl who people lower their voices to talk about and say, "It's such a shame, I feel so bad for her". I don't want to be a that tragic story. It isn't suppose to be my story! I know my story and for fuck sakes, I know this isn't it!

I'm at a loss. I'm so sad. I don't know what to do. I know I have to "fight", but this is a war I didn't wage and don't believe in. I'm no warrior, I'm just a normal girl who had a normal life and as the months go on and the setbacks get closer together, I feel like I am watching my normal life disappear more and more.

This last month has been hard because it has been entirely about cancer. I have officially moved from Wonderland, to a limbo between Wonderland and Cancerland, to living full-time in Cancerland. Where before my cancer life was just one small slice of a full pie-- I was back at work, I was jogging, I was going out to pubs, concerts, camping, trips to New York and London, starting school-- now I do nothing but sit around in a methadone haze, make phone calls and visits to cancer doctors, watch tv, surf the net, read and think. Think think think. Try to solve this unsolvable problem. My mind just goes in circles, trying to figure out the answer to this riddle: How do I get better and stay better?

I just hope this surgery will indeed alleviate the pain so I can be off the methadone, and get out and about more after I've healed from surgery. Even if I'm not at work, I feel like a fuller human when I can at least feel good and pretend I'm just on vacation. I can easily pass my time when I feel good, go window shopping, coffees at Chapters, yard work, house work, meeting people for lunch, maybe hopping on the elliptical trainer we bought 2 weeks before I got the news of this latest recurrence. It sits in living room, a constant reminder of how good I felt only one month ago. A constant reminder that my best intentions were yet again squashed, that hoping and having goals and dreams does not mean they will actually come true.

It gets really painful to keep "moving forward" when your dreams keep getting squashed like that. It is so demoralizing to have to keep picking myself up and brushing myself off and trying again.

The first time this happened was when I won that job competition and realized that I wasn't actually going to be able to start it for a long time.

The second time was in Dec 2005, I had just finished my Interferon treatments, was looking forward to returning to work in the new year and bought myself a whole new wardrobe of work attire. Two weeks later I found a lump. I wasn't going to be going back to work for a while. I had to return all my clothes knowing the soonest I'd be at work was the spring, so no point in having a new winter wardrobe. Returning those clothes was one of the hardest things I've ever done because of what they symbolized. They symbolized my optimism, my hopes for the future, me getting my life back after over a year of it being high-jacked by surgery, radiation and Interferon treatments.

The third time was in late June when I found that little lump. I had gotten myself to the point physically where I was jogging 5k for the first time in my life (I'd always been relatively active (soccer, gym, ex- swim instructor, but never been able to run outside straight for half an hour). Even though it wasnt logical, I had somehow hoped that being that physically fit would keep the cancer away. The fear was always there, because I know it doesn't work that way, but I just hoped so bad that the universe would see how badly I wanted to stay healthy and how much I appreciated my body. I was looking for divine justice, a divine intervention, but I know there is no such thing.

The fourth time, was just over a month ago, when I was forced to really admit for the first time that this "problem" , my cancer problem is huge. I am caught in a one step forward, two steps back cycle that is likely to continue this way, despite my greatest hope and wish. I am a full-time cancer patient right now. Trying hard not to let it define me, but really, I don't have much of a life outside cancer pain, cancer treatments, medicine and appointments right now. Cancer has been my full-time job for the last month. It's getting old and I'm so over it. So bored of this story, I keep saying that. I'm so bored of it.

Everything happens for a reason, what doesn't kill us makes us stronger, things always work out in the end, and if they don't, we find a reason why it was "for the better anyway". These are the mantras we all tell ourselves so we keep on keepin' on through thick and thin. Those mantras don't cut it for me anymore unfortunately. Forced out of blind naivete, my mantras today are: We are only guaranteed this moment, so make the most of it, Shut up and stop wallowing as it is ruining your experience of today, Take comfort in the fact that others have been down this road before you, you can do it too, Death is only a continuation of life, There is no such thing as death, Hopes and dreams are just an illusion, all we have is the present.

I have to explain that last one in my next post. There is a story that goes along with it, making them the most comforting words that I have heard since the beginning of this journey. I repeat it all the time, because of the way it came to me, and because of how true it is.

Happy Dance

I'm so happy!!!!!!!!!!!!!!!!!

Just got off the phone with my London surgeon and he sees no reason why he can't resect all the tumours! Yes!!!!!!!!!!!!!!!!!!

It may or may not make any difference to me long term, but he believes it is worth a shot! He is such a kind man, and is willing to do whatever he can to at least TRY and slow this disease down. At the very least, removing these tumours should get rid of my pain and restore strength and mobibility to my hand if he doesn't inadvertantly damage the nerves during surgery.

So, tomorrow I will get my O.R. date. I imagine it won't be for a month, but I can wait and I will be happy waiting.

IL-2 will have to wait till I'm completely healed and I suspect I won't even be a candidate for it once I am rendered NED by this surgery. The only way they can tell if IL-2 is working is by watching to see if tumours are shrinking. If I don't have any tumours to watch, then they don't know how much to give me. So, that's why I think chemo may have to wait. That's ok, most people who go on IL-2 have organ involvement so I'll save it for when/if that time ever comes!

This is the best news I've got in a long time!

You know what else is bizarre? My London surgeon says he sat down with the radiologist to look at the scans and she pointed out all the tumours. Toronto says they can only see one, the one that is "unresectable" and "don't know why" the other masses we can feel don't show on the scans. Whatever! They are idiots and don't know how to read scans!

Happy dancing I am!!!

Happy Thanksgiving

Happy Thanksgiving Canada!

I can't believe a week has past since my last update. I have a lot to spew but I'm on heavy pain medication (methadone and gabapentin to be specific, and, no, I'm not a heroin junkie!) which has been keeping me sleeping for 15 hrs straight, more if I let myself, and I usually do let myself. I have been walking around like a zombie, I'm so exhausted, see double, have no appetite, feel loopy but also a bit euphoric which is a bonus! And, I'm pretty much pain-free, howevever, I have major weakness in the arm and hand and loss of manual dexterity.

The reason I'm still having so much pain/nerve issues is because, as I expected, they didn't remove all the tumours. They only took out one which they are keeping to use for a vaccine trial that I may be able to partake in next year. So, the tumours that are in me, they press on nerves and that is where the pain comes from. So, sadly, this operation did not make me NED (no evidence of disease), but I knew that wasn't really the plan.

I didn't receive the second opinion from my London surgeon last week, but emailed him Friday and he said he would look at the imaging ASAP. I soooo hope to hear from him tomorrow, with some good news. I'm hoping he can make me NED!

I'll post more when I feel better. I need to get this medication adjusted because obviously I'm non-functional. I can't even drive... what am I saying? I can't even go for a walk I'm so plastered. I hope this all gets sorted out this week so I can live my life again.

Pre-Op

Going up to Toronto tonight for surgery tomorrow. Still have no idea what exactly they are taking out of me.

Went to Emergency last night because I couldn't take the pain. They gave me a shot of Toradol and a shot of Morphine then told me to double my prescribed dose of oral morphine. That did the trick. But holy crap, does this double dose ever make me sleepy! But it is nice to sleep well again after a week of not being able to get comfortable.

I don't imagine that I'll be able to update the blog for at least a fews days after surgery because I don't think I'll have much use of my arm. I'll update as soon as I can.
This is a pic from 2 weeks ago. I think that was the last time I was out of my pyjamas. LOL.