Friday, November 24, 2006

A Picture's Worth a Thousand Words

This is gory so viewer beware.

I had my homecare nurse take some pics of my war wounds yesterday. The wounds from the Nov.2nd surgery got infected and re-opened once the steri-stips came off two weeks post-op. I believe the infection came about because of the steriods they put me on the prevent inflammation, combined with the fact that I have no lymph nodes left in the area to fight infection. But, the wounds from the other 2 surgeries, only weeks before healed up no problem. The difference is the steroids. The nurse must now visit me everyday to "pack" the holes left on my body with gauze and clean out the area. It will be at least another 2 weeks of this until the holes heal up. It looks much worse than it is, I feel no pain. Possibly (ok, likely) because of all the pain meds I'm on for the nerve damage to my brachial plexus.

This is my slashed (3 operations to remove tumours), and
burned (radiation) axilla. It's got 1 long scar and some damaged
skin. The pic is unfortunately kind of dark. My most recent
scars are on my shoulder (hole now), and side (chest wall). This pic shows
2 that are totally healed and 2 that are still healing. The redness
is just from the bandages irritating my skin.

I still have complete loss of mobility of my right wrist and my fingers don' t work properly. They don't know if I will get mobility back, with nerve damage they can't predict apparently. I saw an occupational therapist and she made me this wicked contraption that helps to mobilize my wrist and the wires attached to my fingers help me move them! It looks CRAZY but it is sooo cool. I am typing right now with both hands which I haven't been able to do in a few weeks! I can write again and do just about anything when I wear this thing. It looks far more cumbersome than it is, I honestly barely notice I'm wearing it. It is far more uncomfortable not to wear it because then I notice the loss of function. The OT literally made the brace from scratch in front of my eyes over 3 visits and I am so grateful for it! I can brush my teeth again normally and put a clip in my hair! Still can't manipulate a hair elastic, but hey, I can use a knife, sign my name and do my zipper up again! Such little things, but it means so much to be able to do them again-- who cares if I have to wear the bionic arm! I think it is fan-friggin-tastic!

I have been feeling really good the past couple weeks. My pain is totally under control and I don't feel tired or loopy. The meds are doing their thing without changing my personality so I am quite pleased that we seem to have finally found the right mix at the right dose. Feeling so good means that I have TIME to do things, yet I'm not working. So, I did reach out and contact some agencies to volunteer and I am looking forward to it.

I met with the local hospice and I will be a volunteer driver for them. What that means is that they can call me to arrange to pick up a person who is terminally ill to bring them from home to to the hospice for a program. The hospice offers free treatments like massage, reiki and other programs to terminally ill people, but sometimes these people have no way to get to the hospice. So, they can call me and I can take them! They have to do a police check on me (oh, oh! what will they find?!) which will take a couple weeks, then I will start getting calls. I'm really looking forward to meeting the clients. I will also be working a couple shifts wrapping christmas gifts on behalf of the hospice at the mall down the road. I LOVE gift wrapping. Weird, I know, but seriously, wrapping is my favourite part of Christmas! I love making pretty packages so I am looking forward to these wrapping shifts. The mall is in a community called Cherry Hill which is basically an whole geriatric neighbourhood. I mean, retirement community. I think the gift wrapping table at the mall will be well frequented by little old grannies with arthritis so I should be pleasantly busy making beautiful packages!

I also contacted a children's organization--which shall remain nameless because I don't want my blog to pop up when the organization is googled--and am working in a school one lunch hour per week helping with a sort of "good citizen" group for kids. I did it this week and it was a total gong-show. The woman running it was a wack-job and has no idea how to relate to kids, keep them interested, listen to them ... she was so out to lunch! I couldn't believe how the hour with 20 kids was squandered away because she was utterly disorganized, ill-prepared, and in another world.

The kids didn't seem to notice (they were between about 7-10 years old) and I think genuinely like her because she is "nice" but the group was chaotic and mostly they just talked amongst themselves while the woman rambled about home safety. I debated whether or not to return next week because I was so embarrassed to be a part of this group, but I'm going to give it another shot and see how much I can influence the woman and maybe help to run the program better.

Not to flatter myself but seriously, I could easily run the whole hour myself with very little preparation-- it reminded me of the days when I was a camp councellor and swim instructor. That was over 10 years ago now, but I was amazed how quickly I could get back into that mode and instruct kids. The thing is that this woman has apparently been running this group for a long time, and I'm just there to help. So, I don't want to step on any toes. She's just a volunteer though too. I'm going to try to wiggle my way in and make up for her deficiencies, because the kids deserve better, and the parents who have signed their kids up for this program deserve better. The manager of the organization called me and left a message saying I was apparently a "hit" with the kids and said if I wanted to speak with her I could call. I think she wants to know what I thought and also if I will stick around. I'm going to avoid talking with her until I've decided what to do because I feel weird just attending once and wanting to say that the program seemed to be an utter waste of time and the volunteer running it was clueless how to relate to kids, doesn't explain things well, didn't actually have a plan for the hour and wasted about half the time just thinking to herself outloud while the kids talked amongst themselves. I could have done better given 15 minutes prep-time if I was permitted to! But, it isn't my place. We'll see. I'll give it another shot, maybe it was just a bad day.

Blah blah blah. Going to meet some co-workers for lunch. They aren't going to recognize me with my steroid induced "moon face" and bionic arm! My face looks like a chipmunk from the steroids but I stopped them two days ago so hopefully the swelling will start to go down quickly! I can't stand my double chin.

In cancer related news, I have been avoiding "looking" for lumps and bumps so I have not found any new ones. My next appt. is Dec. 1st at which time I will hopefully get the lump that may or may not be a seroma biopsied (it's growing actually instead of shrinking which is ominous but I'm in numb-mode so I don't worry about it). I'll look for other lumps the night before. No point in finding anything any sooner. Not that I would. I wouldn't dare find anything else. I'm getting a break. A long break from cancer.

Monday, November 13, 2006

Chopping Veggies, The Cure For Cancer?

See, I said it would all be better tomorrow and it was. No use in getting riled up unless there is absolute cause.

Friday I had my follow-up with the medical onc (chemo doctor) in London. I was expecting bad news that there was a tumour growing in my brachial plexus nerves because this is what they basically told me to expect-- it would account for the loss of mobility in my wrist, fingers, elbow and severe nerve pain for which I now take: Methadone, Percocets, Oxy-Contin, and Gaba-Pentin.. that's gotta give me some kind of street cred, no? I'm a hard-core junkie now!

Well, turns out, their guess was wrong! I am NED (no evidence of disease) according to my recent scans! Yay, Sarah might get a break for a while! That lump I found last week is likely a seroma, but if it doesn't go away by my next appt Nov. 27th then we'll do a needle biopsy and get it out if it is cancer. Just wait and watch. I'm soooo excited that I can actually start thinking about having a great Christmas... first of all that I will actually be ALIVE for it, and second of all that I likely won't even be sick for it! Sweet! This is the third Christmas I have been blessed with since cancer, and everyone has had that cloud over it (will it be my last?) but at least I have great reason to believe that I will be here this year and I am so excited about looking forward to something!

I asked about my staging and they are considering me Stage 4 rather than 3C at this point. Moving from stage 3 t0 stage 4 for a cancer patient is undescribable. We all DREAD the thought that that could one day be us. We hope, barder, bargain, pray, believe, that we can maybe just remain stage 3 forever.... Stage 4 is a whole other ball game. If you google satge 4 you don't find many happy stories, not with melanoma. But, it is NOT a death sentence!

I plan on living and not dwelling on what may or may not be. I am here NOW and I feel good NOW and cannot even begin to say how grateful I am for everything and everyone in my life. Not even 30, really just "starting out", but you know what? I've had it good. I have it good. I have such a true love in my life, my living angel who I have been blessed with for 9 years already! How many people get to say that? How many people have such a great core group of friends, who you know will be there for you no matter what, through sickness and in health? I've done a lot. And I plan to do a lot more. I just can't plan on time any more. Time is absolutely up in the air, so I must do things as the opportunities arise, as the money comes in, as I feel like it, without jeopardizing my husband's financial future at the same time somehow. Carpe Diem.

I decided this weekend that I want to volunteer. I can't have kids? So, I'll help kids. I'm going to look into after school homework clubs, babysitting at women's shelters, and of course, because it's that time of year, helping with Christmas toy drives/food bank! That's the project for this week! I'm so excited at the prospect of having something to "do" for a few hours a week that will make me feel productive and hopefully fulfilled while helping children too.

I am so blessed to have a job that I can be on long-term disability and not have to worry too much about my income while I'm off. I get about 75% of my pay, so it's doable. For now, work is so on the backburner I don't even think of it. It was where I was. I am not there anymore and life has changed paths so I must forge through and clear the brush instead of getting stuck in the mud with nowhere to go. That was a an old dream. My new dream is to just BE. And I have the LUXURY of being able to BE because of my insurance benefits. I am so lucky for this, so many people in similar circumstances don't have benefits for their drugs, work at fast-food places for minimum wage and have to think about their most basic needs on top of cancer. I am clothed, sheltered, supported, financially ok, and can just BE and enjoy life.

Tuesday, November 07, 2006

Just keep chopping and it'll all be better tomorrow.


So, the swelling and bandages are gone from my Oct. 3rd surgery with the bat in Toronto that "couldn't" or more likely didn't want to treat me further. There is a pretty little scar, and I was just poking around and what do I feel? A lump! Right under the scar, the same size as what she supposedly took out. So, am I to think it grew out of nowhere or did she just take a bit of it out (see blog entries late Sept/early Oct. 2006 for background) instead of the whole thing?

And if so, why did my new surgeon not see it, even though I JUST had surgery about 2 cm away from the site only 4 days ago? Even though I've had supposed ultra sounds to the area and been poked and prodded. Whatever! Oh, did I mention: Cancer Sucks!!!!!!!!!!!!!!!!

Just give me a break. I can't think about this. I am sick of my wheels turning, I'm sick of thinking. I'm just gonna try to chop some veggies for dinner and watch TV. I'm just going to forget it... for now. I wanna forget it forever. RE-WIND!

Have appt. with Medical Oncologist (chemo doctor) in London Thursday so she'll be able to say what showed up on CT scans the other day.

My appt. with the surgeon isn't till Nov 27th and he's on vaca so no point in pursuing that route.

Ok, Im done. I'm over it. I'm chopping veggies.

Monday, November 06, 2006

Peri-Operative Nursing Incident

Spell-check is hit and miss on this site. Today it ain't working.

I'm going back in time for this entry to over two weeks ago following my Oct.19th surgery. I want to say that my most recent surgery on Nov.2nd was a relatively peaceful experience, filled with lovely nurses and staff who made me feel like a person, who made me feel cared for and who I was able to trust.

On Oct.19th, however, even though it was the same hospital, I had a bunch of snarky, bitter, angry nurses who I can only assume are counting down the days to retirement, because they obviously no longer love what they do and sadly probably have had too many years of feeling underappreciated, undervalued and stetched too thin.

Let me preface this by saying I fully realize this is possibly the least professional email I have ever written in my life. I don't even think I read it over as it was an utter chore to do, when I just wanted to let the incident go. This email is to the "Manager, Perioperative Care" at her request following a show-down I had (who me? can you believe it?) with one of her nurses immediately following my Oct. 19th surgery.

The manager was a lovely woman who completely understood my point of view (or so she made me think?) and was evidently highly adept at conflict resolution. This "letter" was a bullshit piece of red-tape that she required for her follow-up with the nurse, presumably to help assess if any disciplinary action was required. She needed something in my writing, even though we re-hashed the event through my tears while I lay in my hospital bved ad-nauseum.

She knows the story, I was post-op and couldn't write, type, think, or care less about re-visiting this incident so this is what I sent off for "the file". It may not make sense to anyone else but her and I, but I am posting it for myself, because it is what happened to me. It is a piece of my story and shows how frustrated I can get in my cancer journey when forced to deal with people who have no common sense or respect for basic human dignity.

"hi dori,

sorry i have not written to you about the bathroom fiasco. honestly, i have been in too much pain and also have no use of my right hand so it has been at the back of my mind. i just want to forget it. forgive me, but i will just quickly write out what happened in this email instead of a formal letter. you can print it.

i appreciate that the nurse came to apologize and i accepted it after it was modified. she was stuck on the "i thought you were dizzy" excuse and i "didn't hear you say you were ok the second time" which didn't explain why she proceeded to break in the bathroom while I was screaming "what the hell are you doing, and get out!". she only left when i yelled at her more and got off the toilet to motion her out. i said i'd keep the door unlocked after that if she stood right there (anyone could have come in) but after a few minutes (i still couldn't pee) i got up to check if she was there and she wasn't. when she walked by that's when i proceeded to yell at her in front of everyone saying she had no right to come in the bathroom when a patient says they are fine, that she had no respect for patient dignity, crossed the line, and was very rude. she denied all this which just infuriated me more. i went back in the bathroom and locked the door and cried because i always feel like a "bad patient" for standing up for myself.

my feeling is that if she absolutely thought there was something wrong (makes no sense why she would after i said twice thru the door i was fine), a respectful nurse who thinks of her patients as human beings derserving of respect and as much dignity as possible considering the setting, would explain thru the door why she was worried and felt she had to check on me, then open the door slightly to peep in. once she saw that i was sitting calmly on the toilet, she should promptly leave after apologizing for the intrusion. that i could have handled.

instead, this woman busted in with no warning, just saying, "I'm coming in!", as I yelled no! She walked right in and refused to leave until I actually had to yell at her and then get up off the toilet! Completely senseless. What, did she expect me to pee while she stood beside me? I had 100% come out of the anasthetic like I always do. Sure, it was right after I came out of recovery, but I was in recovery for 1/2 hour and sitting up, talking and asking for magazines within 10 minutes post-op. I walked to the bathroom myself and told her twice I was fine. She was WAY out of line and I've never been so shocked in my life-- her behaviour was so bizarre.

i immediately thought she was thinking i was shooting up heroin in the bathroom. i told her i was on methadone, asked to get my bag to change in to my pants before going to the bathroom. when i was in the bathroom for so long and couldn't pee (a side effect of methadone) i think she decided i had gotten my supplies out of my bag and was shooting up. many nurses have immediately thought i was a junkie when they heard i was on methadone. they never ask why or if they do they don't believe me because it is so rare. now i have a letter to carry around with me. my methadone is for severe cancer pain and is prescribed by dr. moulin. this is the only thing i can think of that would warrant such bizarre behaviour from a nurse.

her apology was weak at first because she stuck to the dizzy excuse which makes no sense as i've already explained. when i told her that i thought she had lost sight of the fact that her patients are people first who deserve to be treated how she would want to be treated, i think she better undertood my complaint and i acccepted her apology when she said she had learned a lesson and would never do that to anyone again.

thanks for your patience and understanding when we met Dori. i will be having more surgery this thurdsay and hope not to run into anything like this.


What can I say, I'm a hot head sometimes! I have zero tolerance for people disrespecting me but I don't always handle these situations myself in a dignified way. I'm a yeller, and a screamer, and if that doesn't work I become a cryer. Something to work on I guess. Excuse me while I bow my head in shame. I am almost 30, right? But, in my defense, that nurse was clearly on crack!

Sunday, November 05, 2006

Makeovers Are Funner Than Sugeries! Who Knew?

Saturday, Nov. 4th. Two days post-op (me middle)Had surgery on Thursday to remove 5 masses. I know 4 are melanoma, the 5th is a little lump I found in my right breast a couple days before the surgery. Waiting for path results.

As of Sunday Oct.29th, I have lost mobility in my right wrist, elbow, and most of my fingers. I scribble like a 5 year old when I sign my name. I am typing with my left hand and right index finger only. I have been wearing a hat because I can't manipulate my hands to use a hair elastic and I don't have enough arm strength to blow dry my hair. I'm getting used to it though and finding other ways tp do things. In the pics, no hat because I had friends to do my hair!

My surgeon is concerned about this, so I stayed the night in hospital because they said that way I'd be first in line for MRI's and CT's if spots came up. And they did. I had 2 CT's and an MRI. I know my brain is clear of mets which is a huge relief, because loss like this can be a sign of cancer spread to the brain. It is more likely that there is tumour growing in or near the brachial plexus nerves but I'll get answer to that next Friday. It could just be scar tissue incringing on the area from the Oct 19th surgery-- that's my theory and hope! Geez, it hurts to type. My blogs might be short and sweet for a bit till they get my hand working again!

Went out last night for a friend's early birthday and had lots of fun. No drinkin' though since I'm popping Methadone, Percocets and Gabapentin! We had our faces done and MAC Cosmetics then went out for Thai. Lookin' pretty hot 48 after cancer surgery if I do say so myself!

Pre-makeover. No make up. Trying to look pathetic.

Post-Makeover ! Hot chicks!