Ow

The pain in my arm is excrutiating at times. It comes and goes, but mostly comes and stays. It hurts/aggravates to write/type so I won't be updating much until I've healed from surgery on Oct 3rd. It's the 3rd, not the 2nd. And who knows how long after that till my arm feels better.

I got bad news when I met with my docs the other day. They say there is tumour, behind all the scar tissue (what we were worried about in July!), that they can't take out. This was news to me because I have been told 3 times there was nothing there, but now all the sudden there is? I am pissed, I don't understand. I have had my imaging sent to my London surgeon for a second opinion which I won't get till next week, after my surgery. Did I just confuse you?

My surgery Tuesday will be to remove the one tumour that is more on my side, kinda where your bra strap goes, so that they can keep it and maybe use cells from it in a vaccine trial that is set to begin at PMH in 6 months to a year. I am still fighting to have 2 other tumours removed as well (one sort of on my shoulder/back armpit, the other on my arm about 3 inches down from my armpit), as I know these are operable for sure. I am in so much pain. My arm bones ache, the skin on the back of my arm feels like it's on fire, my neck is kinked, my arm is useless. Pain meds are helping but not close to entirely. I got an oral morphine prescription today, and it is barely helping. This is all because these tumours are pressing on nerves or growing into nerves (hope not the latter).

I will be starting Interleukin-2 (IL-2) in a month or so which is a grueling immunotherapy which will have me staying in a hospital in Buffalo for 5 nights, home for a week, then back to Buffalo for 5 nights and possible this cycle will continue if the treatment seems to be working. My hand hurts too much and I'm too tired (and bored of this shit!) to talk more about it. It is going to suck, but there is about a 5% chance (yes, you read that right) that it could give me long lasting remission. There is a 15-25% chance it will give me short term remission. The reason I have to go to Buffalo is because though the drug is approved in Canada, they don't administer it. I don't want to get into the politics of why, but it looks like one day it will be available here, just not yet. In the meantime, the gov't pays for my treatment in the US but my family has to pay for their hotel and food so they can be with me while I am in hospital.

How am I doing? Besides the pain, fine I think. I am in survival mode. I am living one day at a time, I do not think of the future... I am incapable of it, I think it is too painful. The mind does what it does, it makes things manageable. It's truly miraculous.

I feel like I got dealt some shitty cards here, but I also feel like my life is a miracle and I am in love with it. Now, I have to figure out if I mean that, or if that is the morphine talking.... I think I mean it. I am blessed. Whatever happens, I will be ok...

Got another email from my surgeon. Seems my "team" has all banded together and I am to meet with them on Tuesday. That's me, Derek, Surgical Onc, Medical Onc (chemo doc), Radiation Onc, and probably more than one of each. I am to have a CT scan in the early afternoon to rule out further metastisis (spread), then we will hash out options and make some decisions as far as treatment. This is great news, usually they meet and talk about you when you aren't there. I've never heard of them all getting together at the same time with the patient.

I like that they keep using the word "aggressive"-- as in "aggressive approach", "aggressive treatment", "aggressive surgical options". I think they got the point that I'm not playing the wait and see game. They say that are "extremely concerned" by the rate the disease is progressing in the radiated area. Ya, me too. I wasn't statistically supposed to recur there. Somewhere else yes, eventually, statistically, but not in the radiated area.

It just makes so much sense to me that when I recurred outside the field of radiation in December '05 and my surgeon, thinking she would do me a favour by using my old excision point and not create another nasty scar for me which would have been across my chest, re-entered the radiated area and dragged the new tumour back out through the old scar. When she dragged it out, cells definitely would have broken off, re-infecting the radiated area. Also, that tumour barely had clear margins, I think it was less than a millimetre clear which is nothing. But what do I know, I was an English major (believe it or not. I didn't say I did well!)

Anyway, it's plan time. Action time. I think they are going to re-stage me to stave 4. But I could be wrong there. Whatever, it's just a number anyway. A label. It doesn't change what my body is doing. What is, is. I mean, if the CT shows mets elsewhere than I am definitely stage 4. If not, then the staging is a bit murky. I'd post the staging charts, but I don't want to see them right now. As they always have survival stats attached to them. I know them by heart, but just seeing them in print or hearing them makes me shiver. I'm kinda at this weird borderline stage because the disease is definitely spreading, it just isn't spreading far. But it is spreading fast.

Oh, I found another lump today on the inside of my arm, about 3 inches from my armpit. It's deep, but I can feel it. So that makes the count I can feel up to....four.

I absolutely cannot believe I am at this point. My mind can't wrap around it. Will it ever? I don't know. The times I cope the best is when I can convince myself this isn't me I'm taking care of but someone else. I feel like there are two me's. The healthy me, and the cancer patient me. Hence, my life between Wonderland and Cancerland. I feel like the real me is the healthy me. I identify as healthy. I do not recognize this person who is supposedly sick. I can go through the motions and research and go to appointments and takes treatments, but I don't feel like it is for me. I just can't believe this is me. It is the most bizarre feeling. A twilight zone. I suppose that is what is called dissociation or is it disassociation? A coping mechanism. I don't want coping mechanisms, I don't want anything to have to cope with. But here I find myself.

Jeez, I just whine don't I? Poor me. I guess that's why this blog is good. No one hears this shit in real life. The thoughts just roll in my head 24/7, but no one hears it. I don't want anyone to hear it. I don't want others to feel my pain. I don't want to say my fear out loud because then it seems more real.

Derek has been buffering a meltdown every 1-3 months for the last 2 years. That was pretty good I think, considering. But since this last turn of events I've been having a meltdown daily. Except today, I think this rambling incoherence might be the equivalent of a meltdown though. What would I do without Derek? How is he so strong? It breaks my heart that I am breaking his heart. It breaks my heart that he has to worry, that he has to see me suffer. That he will see me suffer more.

Ok, pity party done for tonight.

On a happy note, we tried out a new Japanese restaurant tonight for dinner and it was super delish! We both ordered the vegetarian bento box and it was the biggest bento I've ever seen with veggie maki, tempura (no egg in the batter, yay!), this mashed potato thing (japanese?), miso soup, salad, veg gyoza, rice! What a feast. I ate the same amount as Derek, as per usual, no wonder I have a little pooch and a J-Lo butt. It's worth it to be able to eat well! I think eating is my favourite passtime.

I also finally got around to tidying up the office today. The desk has about 6 months of papers/bills piled on it waiting to be filed. It feels so much lighter in here now with those stacks not staring at me.

Oh, and the parking ticket I got outside Toronto General last Sunday was waived because apparently if you call to dispute, there is a one time waiver for first offenses! I was all ready to dispute and took pictures of the street signs but had no idea how I was going to be able to fight a ticket in another city without spending more money on gas to get to court than the amount of the ticket. So, that was a pleasant surprise.

Well, it's late and I have to pee so I best say goodnight. Goodnight, sleep tight, don't let the bed bugs bite.

Just me again. My surgeon (who is female by the way) just responded again to my email. This is the response I was looking for.

It just goes to show that you have to be your own best advocate with ANY doctor, do your own research, be on top of things, don't just roll over and accept what they say.

From my surgeon:
"I understand your feelings and frustration. I am looking into options for aggressive surgical resection as well."

Now that's more like a team player. Sheesh man. Lucky I have the energy, education, language and confidence to fight these people a bit. What if english was my second language or I was too tired too fight or I was raised never to question authority.I am just steaming mad!

New Surgeon Required

Sorry, to use copies of emails instead of actually blogging, but I'm too lazy to repeat stories which are already old and boring to me.

My surgeon has basically given up on me which I find appalling, maddening, frustrating, and illogical.

Her point is that since I've found more lumps (which by the way don't show up in the MRI done on Sunday-- I ask again what the hell an MRI is good for if it can't even pick up tumours which are clearly larger than a pea!) the disease (statistically) will keep coming back therefore there is no point in removing them unless they cause me pain.

This is unacceptable to me at this point as I personally know of many who have only had local recurrences for years! And if I was at a major cancer centre in the U.S. they wouldn't hesitate to take these suckers out. Sure, chances are it will come back but a) it doesn't HAVE to as there are lucky people that deal with a bout like this and then something kicks in in their immune system and keeps the beast at bay for years , b) taking them out will at the very least slow down disease progression, c) it hasn't spread to organs yet so we must attack it where it is, d) um, every "treatment" offered once the disease has spread beyond the skin is not truly aimed at "cure" (because there is no cure) but in fact to "buy time" or slow down disease progression.

Maybe she has forgotten this or likes to believe that what she was doing up till this point was trying to cure me. Statistically, she wasn't going to cure me from the get-go. So why would she all the sudden throw in the towel now? Delay progession. Keep it at bay until there is a cure. Keep it at bay for as long as possible. I'm fucking worth fighting for. I could be the exception to the rule and no one on my team should give up on me until I'm dead. I personally know of people with melanoma that spread to the brain that had it removed and are fine. This is soooo exceptionally rare, but you know what? This is my life and I have to believe that I could be that exceptional case too and my doctors need to do everything they can just in case I am that person. They don't know.

There is no doubt in my mind that if she was me, she would have the tumours resected. The are in the armpit for godsake and they are relatively easy to remove. Of course she would. Because it would buy her time possibly. Apparently she had decided that I'm not worth the effort. But, because I'm a bitch, she's going to do it anyway.

Here' what transpired yesterday.

Surgeon:
"If you are having more lumps, it is unlikely that local treatment such as surgery will be the best answer. It will only come back. MRI shows only one lump with some growth with local involvement of muscle but it is not seeing the small deposits. Local excision is only then used for the lumps that are symptomatic. I think that we should ask [Dr. Medical Onc] to reconsider systemic therapy....perhaps an experimental protocol? I think we should restage urgently with CT thorax/abdomen/pelvis to make sure everything remains localized. [Secretary] will call you with the appointment. It may be worth harvesting one of the lumps for that experimental protocol I was talking about but as far as I know we are still not using this for treatment. I will find out. For now we are keeping the OR date October 2 open for you regardless. I will be in touch."

My resonse:
"I personally know of people going for years only experiencing local recurrences, and while I know what my odds are, I also know there certainly isn't any benefit to leaving these in.Taking them out could slow down disease progression... and since I'm already booked for the OR I especially don't see why they shouldn't come out. Also, something is causing my arm and hand enough pain that I am taking T3's around the clock and can't type or write without the meds.If systemic therapy is indicated then it would not be aimed at curing, but rather slowing down progression. Just the same, I don't see why the tumours that are resectable wouldn't come out, sure they might come back, but it may buy me more time. I could understand if I had organ involvement why you wouldn't bother with the axilla, but as far as we know (as of July) I do not. Knocking on wood that next CT confirms this. I'm not a statistic, and removing these masses could help me. If I were at MD Anderson, they would be resecting and resecting until it became unresectable. Just my two cents. Sarah"

Surgeon:
"That sounds like a plan. We will hold the OR time for you and do whatever we decide it is right at the time."

It's fair to say I don't have much faith in my doctors right now. I wish I were in the States (if i were insured of course).

Untitled 2.0

Melanoma is out to get me. I just found another lump around the corner from my armpit sort of on my shoulder. Now, that's 3 I can feel. One on my side, lower armpit, and one right in my armpit by my old scar, and now this one. Holy shit.

I don't know what is going to happen, but I know this will not be fun.

I'm so sick of this. Why couldn't I have been one of the lucky ones?

Edited to add: I was going to delete what I just said because now that I am a bit more lucid I realize how ridiculous and self-pitying I am being and I'm rather embarrassed for myself. But then I figured, that was real in that moment. Just an example of the emotional swings. I had a bath and while am totally heartbroken and terrified, my overwhelming mood right now is: Bring it on bitch! I'm taking you down!

Untitled 1.0

Surgery is scheduled for October 2nd.

Here's an email to my surgeon I just sent which sums up my concerns at the moment.

"morning

had mri on sunday. pretty sure i found yet another lump near scar line from my first two surgeries-- bit bigger than a pea. also having constant pain in arm, hand, neck, upper back, little numbness in hand. T3's helping sort of. I can't help but think that there is something more than scar tissue going on elsewhere too as the whole area just seems to be getting harder and protruding more.

also, wondering if i will need to spend the night in hospital after surgery? i would definitely rather not unless absolutely necessary... first lnd i was fine going home, second i stayed in hospital but i think i would have been fine at home. it is your call, i'm not sure what the risks are to me leaving. i just know i'd be much more comfortable at home (sleep! and food!) and the expenses to my family in accom. and food would be greatly reduced.

thanks

sarah"

Camping with Derek

Derek and I drove straight from my appt. Friday in Toronto to Rock Point Provincial Park on Lake Erie. It was beautiful! A bit rainy, a bit chilly at night, but we had a wonderful weekend. Had so much fun, just my boy and I!

You should eat more blueberries

I know people mean well, but seriously...

If you know someone that is seriously ill, one of the worst things you can do is suggest books such as "You Can Heal Your Life" by Louise Hay which ultimately just blame the patient for their problems OR tell them to eat more blueberries.

I don't care if you think I should eat more blueberries. All that tells me is that you are ignorant, and need to read something else other than Chatelaine magazine.

Go eat more blueberries yourself. And while your at it, think more positive, do yoga, go for reiki treatments, spend $300 a month on supplements, get psychotherapy because obviously you don't love yourself, have more sex, carry crystals, don't drink from plastic, go to a clinic in Mexico, eat only organic or macrobiotic, start eating meat again, never have a drop of alcohol, meditate religiously, work out religiously, and think loving thoughts about everybody every second of every day. If you don't do everything I have suggested, then you obviously don't want to truly get better. And if you do do all these things and you still don't get better, it is because you didn't try hard enough or want it to work badly enough or you just plain didn't do it right.

After all, it is your fault.

Boring details and random tangents

Blah. Bleh. Tired of this, but I can't be.

Edited to add: This entry ended up being very long and dry. It's for me so I have a record of my thoughts on all this. Seriously, unless you want to torture yourself, don't bother reading this entry! At least not in one sitting!

Ok, so Friday. Friday, saw my surgeon. She apologized for telling me through email, but not for the delay. She says she was going to call me this week. Um, she should have called me a month ago. Whatever.

Turns out she (the surgeon) fucked up even more than that. This is kind of confusing to bear with me.

When I found that pea sized lump in my armpit in June, they did an MRI. The MRI confirmed a mass was present and the MRI report (which I finally saw for the first time on Friday, along with the path report from the excision) stated where the mass was located, and the size. The mass found on the MRI was about 2.5 centimetres round, as opposed to the small pea I was feeling and that my surgeon felt. Do you see where this is going?

Because we all felt a pea beneath my skin, my surgeon took that mass out. It was a recurrence. BUT, it was not the mass that showed on the MRI or the mass that was referred to in the MRI report. My surgeon took out what she felt, but obviously did not look closely enough at the MRI imaging or the report. If she had, she would have realized (and eventually did...) that there were in fact 2 masses that needed to be removed. One that was on the imaging, and one that was not (the pea). Just in case you are wondering, this mystery 2.5 centimetre mass is NOT the second mass that we were previously concerned about which turned out to be just scar tissue. Nope, I have a whole other tumour, have had it apparently for months, could have had it out in July, but there it is, still inside me. Neither of these showed on the CT scan (um, what are CT's good for exactly?) and only the larger one showed on the MRI. Crazy.

So, my surgeon admitted that mistake, but was not overly apologetic. I can sort of see it from her point of view. In her mind, this was a blunder, but the chances of it being a fatal blunder are very slim. A couple extra months of this thing being in me is probably not going to make a difference in whether I live or die. It does make a difference to my sanity though. I know that sounds surprising to people reading who are not that familiar with certain aspects if advanced cancer. Certainly, it is better to get these tumours out than to leave them in, but statistically speaking, a couple months delay in removing these suckers when they aren't in an organ or strangling an artery is unlikely to affect a person's overly survival. Statistically. On an individual level, of course it could theoretically make a difference. But, there is no way to ever know or to be able to measure that. Much the same way as, statistically speaking, my prognosis is shit. Take a 1000 people with stage 3c melanoma and they can tell you what percentage will be dead within 5 years and 10 years. It's not pretty. But they can never tell me that I won't be one of those people that will be alive in 10 years. Because there are some that are. There is no way of knowing what will happened to me. And that is why there is ALWAYS HOPE!

Anyfuckingway, what now?

I wait for another MRI date. I will harass the hospital on Monday and not wait for them to call me. It has been requested by my surgeon as "urgent". Based on past experience, that means the soonest I'll get the MRI is in 2-3 weeks. Backlog.

I will have another operation. This time (as with my first 2), I will be completely under and likely stay overnight in the hospital. I'll be sore. My arm is going to get fatter (lymphedema) and my range of motion will get even smaller. One day I should post pics of my armpit and pics of me trying to raise my arm over my head or put it behind my back. Ain't pretty. But, at least I still have use of it. I can still just reach my head to wash my hair! But I digress. Also based on past experience, my OR date will likely be in a 3.5 weeks to a month. That's the backlog for cancer surgery. Nothing new or surprising. It's the same for all cancer patients and has been the same in London and Toronto for me.

After that, there is talk of me entering a trial which I am mighty intrigued about and a bit miffed as it has not been mentioned to me before. I have to talk to my medical onc about this because it is possible that my surgeon is a bit confused. Usually, the trials start for my kind and stage of cancer in Canada when you hit stage 4 (distant mets or organ involvement) OR you have an unresectable (inoperable due to location/complications) local tumour. But so far I have had all resectable local recurrences. Knock on wood.

If I was in the U.S. there would be many a trial that I qualify for and have qualified for. Not as much going on by way of research up here because we a) don't have the money, and b) don't have the patients. For those of you who have taken a statistics course, this makes sense, for those of you who are scratching their heads, just nod and smile. Makes more sense to wait for the results that come out of the trials in the U.S. for my stage and my cancer anyway.

Now, you're wondering why I don't go to the states for a trial. Trust me, I've thought about it and came to my decision back in January. It doesn't make sense for me to do that. It would cost me out of pocket for travel, consultations, blood work, scans, appts. with the US doctors. In a trial, you are monitored very closely. They would want frequent scans and probably appts with me to check in possibly every week depending on the drug involved. I could maybe get my scans and bloodwork done here and send that stuff to the States so I didn't have to travel for those. But I would still have to pay for them because they would be above and beyond what OHIP (Ontario Health Insurance Plan a.k.a. Socialized Medicare for those of you outta province/outta country readers) is willing to pay for as part of my disease protocol. Factor in that there HAS NOT been a significant advance in the treatment of advanced melanoma in, well, ever, or 40 years or something, then I'd pretty dumb and naive to spend thousands and thousands of dollars to join a US trial at this point. For me to actually hit on a trial that turns out to be the one is probably less likely than me winning the lottery next Friday. I'll save my money thank you.

My point was, before I struck another tangent, that I am very keen on this trial of which my surgeon speaketh. It would be free to me and I have nothing to lose. I don't know anything about it (yet!) except that if I do qualify (which I am skeptical about because of my stage 3 status and not stage 4) they will take part of my tumour, extract some lymphocytes which are the good "killer cells" and try to grow more. Then somehow or other through hocus pocus scientific stuff I don't understand (yet!) they will put all these lymphocytes back in my body and hope that gives my body the extra umph it needs to fight off the disease for good. Sounds interesting. Hey, it's something!

I'm also going to look at radiating the area again. This would be after I'm completely healed from the surgery. Last time, radiation wasn't recommended and I didn't want it again anyway. But I've been thinking about it more and talked with my surgeon about it and damnit all, we might just try it again.

My thinking is this towards radiating the local area:

Radiation in my disease does not increase overall survival statistically. What it does do is reduce the chance of recurrence in the local area by 80%. That's confusing. Basically what that means is, if you are fated to die this isn't gonna help you as the disease will just show up in another part of your body. But they can't predict who is fated and who isn't.

Now, I was radiated to my axilla (5 days/week for 6 weeks in Jan/Feb 2005) and this statistically should have meant that I would not recur in my axilla. I did though, BUT, even though the recurrence was still considered local, the tumour was about a centimetre OUTSIDE the field of radiation. Interesting. When the surgeon removed the tumour, she went through the same excision (scar by that point) from the removal of my first tumour and pulled the 2nd tumour through the area that was radiated and out of me. Then, I recurred in June back in the radiated area. Is it possible that as she was pulling the tumour out, cells broke off in the previously radiated area, once again infecting the area with melanoma? Yes, it is possible.

It is also possible (but admittedly unlikely) that because my body has now has had 4 tumours appear in the same local area and no where else in my body that my body is doing a fabulous job of not letting the disease spread elsewhere. MAYBE, just MAYBE there aren't any rogue cells travelling in by way of my blood and lymph fluid searching for that perfect place to set up shop and grow lethal tumours. MAYBE, just MAYBE all the bad cells are still local and have not travelled. So, I radiate the area AGAIN, this time a bigger area, and hope that it kills all the melanoma cells left behind and that none have already escaped to other parts of my body.

It just occurred to me that some people reading might be wondering why they can't just do some test to see if there are cancer cells in my body. There isn't such a test. I know, I always thought cancer would just show up in blood. Nope, imaging such as CT scans, Xrays, MRI can usually detect tumours depending on where they are/how big, but just because you don't have tumours doesn't mean you don't have microscopic cells floating around looking for a place to hide and form tumours. That's my layman's explanation and about the extent of my understanding of this crap.

That's why taking tumours out does not necessarily give a person the mythical "all clear". Depending on where the tumour was and other specifics of it, they can tell you what happened to a percentage of others in your same situation. Like with Sheryl Crow. She had stage 1 breast cancer in-situ. It was caught very very early because she was very very lucky. Statistically something like 95% of people in her exact situation won't recur and they gave her radiation just to be extra certain. She is really lucky if she is indeed in that 95% and because she likely will be, after a few years recurrence free, doctors will consider her cured if they don't already now.

Back to me and my radiation.... I have to have some serious chats with a couple radiation oncs before the final decision is made. Radiation is never fun. It is going to be especially unfun to have it twice to the same area when the tissue will have an even harder time healing and I am still healing from nerve damage from last time which I won't even begin to describe except to say, holy fucking bitch and ow. Radiating twice will mean more damage. And more lymphedema (fat arm!). Is it worth it? Statistically, not likely. Individually, maybe. Tough decision ahead.

Phew. That's it for now. Just wait for O.R. date, then figure out trial and radiation. This whole process (if radiation is going to be involved) will not likely be over until Christmas!!! At least I sort of know what to expect because I've been through it all before.

Apology accepted but that doesn't mean I'm not pissed

From the secretary this morning:

"Sarah,

The error is mine and I do apologize. The results I saw were only from the earlier excision and not July 25th at Mt Sinai. I have now found the results and faxed them to Dr Medical Onc's office. As well, I have printed a copy of the MRI results and biopsy results for you and may be picked up at the next appointment or could be faxed or sent through regular mail.

An appointment is on hold for this Friday Sept 8th at 10:00 - this of course may be changed if not convenient for you. I will leave a vm on your home number regarding this appt as well.

It is unfortunate that this lack of communication happened and I will not make excuses on my part but will learn from this experience.

Sincerely,

Admin Assistant to Dr. Surgical Onc"


Ok, mistakes happen. It was an unfortunate situation. She should have just asked the surgeon directly when she couldn't find the info I was looking for! I feel bad, because she's probably in deep shit now. She's new. I spoke with her this morning and she felt really bad. I was gracious without excusing her. I'm sure she has learned from this mistake. I'm sure her job is tough, juggling the scheduling of people who are sick and dying, dealing with them on the phone, fielding multiple demands from her surgeon and other doctors. I wouldn't want that job!

Freaking out

I am freaking out. The following emails say it all. I can't handle this shit. I just can't. I can't do this again. My heart is breaking.

Me:

"Hi Dr. Surgical Oncologist,

Sorry to bother you directly. I have been calling your office for a month now trying to get my path results from the excision you did back on July 25th, without any luck.

I have requested that you call me multiple times, or that someone let me know what is happening. My calls are not returned and when I do happen to reach your secretary directly she says she'll call me back with info then doesn't. The one time she did return my call, it was 2 weeks later and she wanted to book me for the excision! I had clearly left detailed messages that I had had an excision and was looking for the pathology report.

I resorted to calling Dr. Medical Oncologist's secretary the week before last and she is having no luck getting the info either. Dr. M.O. called and left a message that there was no record of me having the excision at all.

Is the pathology not in yet? What has taken so long? When it is found, can a copy please be sent to me at home?

I cannot be reached during the day this week but please do leave a message on my answering machine or email me back if you have any information.

Thank you

Sarah"


Reply from Dr. Surgical Oncologist:

"Dear Sarah

The pathology report is available through the Mount Sinai Hospital which is probably why Dr. Medical Oncologist's office couldn't find it. The nodule that I removed was melanoma that had come back just under the skin in the soft tissues andI have been wanting to speak with you about the results and also about the MRI scan of the axilla which I reviewed again with the radiologist after we saw each other last. I know that my secretary was trying to get you to come in and see me. She offered you an appointment for last Friday. When she said that you did not want to come in I have been planning to call you to discuss the results but because of the long weekend I have not had the opportunity.

The problem is that I went around the nodule (what I could feel) but there were melanoma cells at the edges of what I took out. Also, the MRI suggests that there may be another nodule in the underarm....it looks worrisome and may be another recurrence in the soft tissue of the underarm. It seems to be in the lower underarm against the chest wall, not the upper part. I wanted to see you to reexamine you to see if I could identify it and also try and figure out what we should do next, first to try and and see if it is true, try and find out where this is and what we should do about it. I would very much like to see you to reexamine you. Please let me know what you want me to do.

Secretary, can you please mail the pathology report from MSH to Sarah? I excised an area from the underarm in June/July. Also please include her most recent MRI scan.

Dr. Surgical Oncologist"


Me back:

"WHAT?!

How could this information not have been relayed to me? I have been calling for a month. When I spoke with your secretary a couple weeks ago, I asked her about the path and she said all she had was a note that I had my MRI and I needed to set up an appointment to have an excision. I said no, I already had the excision on the 25th. She said she'd look into it and then I never heard about it again. Obviously there was miscommunication, but how could it not have been sorted out sooner? I have called and left more messages. I should have just emailed you directly Dr. S.O. as this all got sorted out in a couple hours.

So, I can see you ANY time and would like to see you, obviously, as soon as possible.I am completely shaken and in shock. Was not expecting this.

Thanks

Sarah"

FUCK!!!!!!!!

Grace and Grit

I'm reading Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber by Ken Wilber and I am thoroughly enjoying it. Treya died of breast cancer in the early 90's and her husband was (is) a respected transcendental psychologist in the U.S. with several major publications on the subject. It is very interesting to read how they wrestled with modern medicine as well as eastern medicine and philosophies of illness during Treya's battle.
It is something that I have been wrestling with too, as there are so many mixed messages about illness in our society. On the one hand, we want to believe that if you are good and kind and "Positive", you can effectively beat any kind of illness or that, in fact, you will never become seriously ill in the first place. But the reality is that people get sick and there is no rhyme or reason to it and often nothing that can be done about the outcome. Healing is a word that is often misunderstood to mean "cure". Really, healing is about achieving a sort of inner grace and wisdom, a place of acceptance, of understanding of ones role within the world, and of the impermanence of everything.

I want to quote this book and share, because it really articulates well all the different messages we are given towards illness. No wonder I've felt so confused and have had such a hard time searching and finding meaning to my cancer.

From Grace & Grit:

"... we had to face...dealing with the sickness of cancer, dealing with all the various meanings and judgments that our different cultures and subcultures attached to this illness, that cloud of voices, images, ideas, fears, stories, photographs, advertisements, articles, movies, television shows...vague, shapeless, but dense, ominous... full of fear and helplessness...

And it wasn't just the general society at large that supplies various stories. Treya and I were exposed to several different cultures and sub-cultures, each of which had something very definite to say. Here are just a few:

1. Christian -- The fundamentalist message: Illness is basically a punishment from God for some sort of sin. The worse the illness, the more unspeakable the sin.

2. New Age -- Illness is a lesson. You are giving yourself this disease because there is something important you have to learn from it in order to continue your spiritual growth and evolution. Mind alone causes illness and mind alone can cure it. A yuppified post-modern version of Christian Science.

3. Medical -- Illness is fundamentally a biophysical disorder, caused by biophysical factors (from viruses to trauma to genetic predisposition to triggering agent). You needn't worry about psychological or spiritual treatment for most illnesses because such alternative treatments are usually ineffectual and may actually prevent you from getting the proper medical attention.

4. Karma -- Illness is the result of negative karma; that is, some non-virtuous past actions are now coming to fruition in the form of a disease. The disease is "bad" in the sense that it represents past nonvirtue; but "good" in the sense that the disease process itself represents the burning up and the purifying of the past misdeed; it's a purgation, a cleansing.

5. Psychological -- As Woody Allen put it, "I don't get angry, I grow tumors instead." The idea is that, at least in pop psychology, repressed emotions cause illness. The extreme form: illness is a death wish.

6. Gnostic -- Illness is an illusion. The entire manifest universe is a dream, a shadow, and one is free of illness only when one is free from illusory manifestation altogether, only when one awakens from the dream and discovers instead the one reality beyond the manifest universe. Spirit is the only reality, and in Spirit there is no illness. An extreme and somewhat off centered version of mysticism.

7. Existential -- Illness itself is without meaning. Accordingly, it can take any meaning I choose to give it, and I am solely responsible for these choices. Men and women are finite and mortal, and the authentic response is to accept illness as part of one's finitude even while imbuing it with personal meaning.

8. Holistic -- Illness is a product of physical, emotional, mental, and spiritual factors, none of which can be isolated from the others, none of which can be ignored. Treatment must involve all of these dimensions (although in practice this often translates into an eschewal of orthodox treatments, even when they might help).

9. Magical -- Illness is retribution. "I deserve this because I wished So-and-so would die" Or, "I better not excel too much, something bad will happen to me." And so on.

10. Buddhist -- Illness is an inescapable part of the manifest world; asking why there illness is like asking why there is air. Birth, old age, sickness, and death-- these are the marks of this world, all of whose phenomena are characterized by impermanence, suffering, and selflessness. Only enlightenment, in the pure awareness of nirvana, is illness finally transcended, because then the entire phenomenal world is transcended as well.

11. Scientific -- Whatever the illness is, it has a specific cause or cluster of causes. Some of these causes are determined, others are simply random or due to pure chance. Either way, there is no "meaning " to illness, there is only chance or necessity.

Men and women necessarily and intrinsically swim in the ocean of meaning; Treya and I were about to drown in it. On the way home in the car, on that first day [after diagnosis], the various meanings were already flooding through us, and nearly choking Treya."

Those two pages of this book just made everything so much clearer for me. It is like a weight has been lifted off my shoulders. When you learn you are ill, or you learn that anyone is ill, you automatically start searching for meaning or reasons why. Why this happened to them as opposed to me. Why this happened to me, and not them.

Before I got sick myself, I am ashamed to say, I would often attribute others' misfortunes and illnesses to either #2 New-Age (Oprah Winfrey has managed to brain-wash half of North America into believing this crap), or #5, Psychological. Fair enough, in order to feel safe and secure in our own world and our own immortality, we desperately seek to believe in a reason why bad things happen to other people and how we can avoid bad things happening to us. It is human nature to seek out that comfort, it is the same reason why I believe people subscribe to various religions. Logic and reason are thrown to the wind because logic and reason don't often make life feel comfy and cozy and like everything will be a-ok or for the greater "good".

I have wrestled with the questions and the meaning. Am I be punished for something I did in this life? In a past life? Did I somehow wish this upon myself by not appreciating my life more? When I had a major depressive episode 6 years ago and I fleetingly thought that death could be a decent alternative to the mental torture I was going through, was this thought somehow coming true for me now? Are my emotions killing me? Did I bottle up emotions to the point where they became a physical illness? Have I not been positive enough? Did I not want to have a future badly enough? Did I judge others too harshly? Did I take the wrong path with my life and not realize that I was suppose to take a different path? Is there some message a la Oprah Winfrey I'm suppose to get out of this? If I figure out the message will I be cured?

The answer to all these questions is clearly and logically, NO. And I have to remember that. My life has been great, is great, I am a good person, I have lead a fairly healthy lifestyle, I have committed no (mortal) sins, and I don't believe I am being punished. Thinking that any being (such as God?) is punishing me or anyone specifically is highly ego-centric. I can't fathom that out of the billions of living creatures on earth and in this universe God would single me out to teach me some sort of lesson. Puh-leeze. Life is so much bigger than petty lessons in being a decent person or living an "authentic life" or finding one's "true calling". Fuck, I'm so mad at Oprah right now!

It is hard when society sends you so many mixed messages. But ultimately, I truly believe in a combination of the Medical, Scientific, Buddhist, and Existential models as outlined above. There is nothing I did to deserve this. And I accept that we are all mortal beings. Illness is not necessarily a "bad" thing. It is a part of life. And death is also a part of life, not the end of life. To live in constant fear of illness and death causes suffering. And I don't want to suffer as it ruins my experience of this moment, which as I've stated before, is all that we are guaranteed.