Good Design Gone Bad.....

Gotz ta book my ticket soon!!!

2011-03-04T18:20:00.000-05:00

Gala3

2011-02-20T20:21:00.000-05:00

A fellow Lymphomaniac hosted his first fundraiser in celebration of his 3 years post stem cell transplant, in support of the Leukemia Lymphoma Society of Canada. The event raised $6000. and was a great time!

peeking in

2011-02-02T20:05:00.003-05:00

Just poking my nose into my neglected but not forgotten blog. Perhaps reading back on some of the blogs from early last year will inspire me to get writing. I did keep up my journal for the most part over the past year, mostly so I would be able to go back and tell the tale if I ever got blogging again... "ever?"
My stemcell transplant turned out to be harder than I ever could have imagined and I just couldn't keep up my blogging. Most days I was just too tired, and I think at other times it was just too hard to live it, let alone talk about it.
As I approach the first year anniversary of my stem cell transplant I’m going to try and get back to my writing and go back and share this experience. Not because it was so awful, but because it's over and I have begun to move on in so many ways. I just need to figure out where to start?

Light the Night Walk- Ottawa

2010-10-18T21:05:00.006-04:00

The 1st Light the Night happened on October 16th at City Hall. The turn out was huge, they say about 1500 - I believe it! Team Lymphomanaics was on the scene. We met up for coffee & cupcakes just after dinner, and got busy doing our hair!

The event started at twilight with registration and some drawn out speeches "we can't hear you!" and then collecting our balloons. Walkers carry illuminated balloons with lights in them - white for survivors, red for supporters and gold in memory of loved ones.

At dusk we started out our 5km walk beside the canal. It was a little bit chilly, and a little too long for someone like myself in recovery but we had fun with our balloons, glow sticks and group antics!

"Cancer Can't Dance Like This" Show & After Party in support of the LFC

2010-09-17T20:32:00.000-04:00

V & I worked pretty hard (with some help) to put together the first official Lymphoma Foundation of Canada fundraiser in Ottawa on the tail end of the Lymphoma Information Seminar of Sept 17th.
The night started with a one-man comedy show called "Cancer Can't Dance Like This" by Daniel Stolfi - a lymphoma survivor. After the show we had dessert & cocktails, a silent auction, and door prizes!
The event was a huge success that I had started planning and then had to back out mid-way during the worst of my treatments. I came back on to the project when I was feeling better, but it was allot of work for my tired body... maybe a bit too much!

Im behind on my own blog, but guest blogging here:

2010-03-22T08:50:00.005-04:00

Check out The Ottawa Regional Cancer Foundation Blog:
http://www.ottawacancer.ca/en/home.aspx

Thanks!

I have exorcised the fever... it's in the sink.

2010-01-24T20:29:00.000-05:00

The night before my platelet transfusion I got a fever but it didn't last long on the thermometer, so I didn’t wake anybody up and spent the night sweating it out – literally. The next day (Fri) I seemed okay and the transfusion went well but my throat, which had been slowly swelling since the day before, was now killing me. So I mentioned the night fever to the doctor and he prescribed some general antibiotics and gave me a lecture about calling the first sign of infection, fever or worsening symptoms.

I left the hospital just before dinner and it was like my body just fell apart on the ride home, perhaps it was trying to tell me not to leave! The pain in my throat was so bad it hurt to swallow my own saliva, let alone dinner, and I was sure the swelling had doubled since driving home so I went straight to bed hurting from head to toe.

At midnight I got a fever and we drove back to the hospital. I spent the night in Emergency because the doctors thought I had an abscess in the back of my throat that would need to be opened and drained – yu-uck! Luckily the scan (I can’t remember what kind I had(?) thanks hydra-morphine) didn’t show an abscess; just a nasty infection that required serious antibiotics, and in my opinion “serious” pain killers! (In Mum’s opinion a serious exorcism too, so I sent her home to get some sleep and holy water.)

Now I'm settled into 5-west for a few days while I get antibiotics for the worst throat infection I have ever had. Last night (Sat) I thought I was feeling much better because the pain and swelling was about 50% less than it was the night before when I was admitted, but today the pain came back big time this morning.
I kept waking up overnight before I was due for my meds in pain and needing them early. This morning I was so sore that the nurse said she could double my pain killers up to 2mg every 4 hours and ran it through my line. 60 seconds later I was overcome with nausea and just made it to the sink to barf up breakfast. And then I felt great again – but that didn’t last long.

Well I guess my breakfast wasn’t digested yet and still chunky, so it wouldn’t go down the drain! That’s one way to get visitors! I have had to endure a steady stream of nurses who came to look at it, who then called the cleaners, but they didn’t know what to do, so then the maintenance guy had to come and assess it with his buddies and then come back with the right tools to take the stopper out of the drain.

As if it wasn’t embarrassing enough to have everyone check out my “sink chunks” and then lecture me about the merits of throwing up in the toilet – ya thanks – every single one of them asked me “what was for breakfast today?”

Pain killers! Fuck off, my throat is sore... where’s that holy water?

Heavy "Metal" Complaints

2010-01-22T17:41:00.001-05:00

My gums are swollen and my teeth feel like they have thick barbed wire wedged in-between them, it’s uncomfortable and itchy. I bet this is what braces feel like sometimes; like my teeth are being wedged apart (or pushed together). I keep cleaning my mouth with my soft baby toothbrush and putting Ambisole (stuff for babies) on my gums, which helps, but it’s a constant irritant now.

I also have insane heartburn and dare I say it - gas that smells like metallic broccoli, which at least compliments the constant metallic taste in my mouth and the metallic urine smell emitting from my body. They don’t put that in the BEAM side effects handbook.

I have also had a headache since yesterday and a soreness is starting to come back into my body that feels like I've been thrashing around at a heavy metal concert. I want my new blood already, I want my new body already! I'm feeling very fed up and done, and I haven’t even done the heaviest part yet.

My First Bloody Gift

2010-01-20T13:44:00.002-05:00

My clinic nurse called me earlier in the week to tell me I was neutropenic and that my platelets are so low, point 7! I guess the average person has between 150–450 x 109/L)[15] platelets, so I need a transfusion by the end of the week.

I asked her if low platelets were responsible for my low energy and she said no, it’s more about keeping one from bleeding and bruising, and just as she said it I happened to be adjusting my shirt and looked down to see a large purple bruise on my stomach. Last night when I gave myself my neupogen shot (yes I'm doing it on my own now!!!) the tiny needle left me bleeding for awhile which was unusual so I thought I might have a pen point size bruise, but not a bruise the size of a sand dollar!
So I have been careful to brush my teeth lightly (even getting a baby toothbrush) to avoid bleeding in my gums, and being gentle on my nose, bowels etc. Because once I got bleeding it might be hard to stop. I'm nervous about my bowels because it’s always my weakness to get constipated and tear after chemo, and it’s already hurting so much to go.

I'm not however nervous about getting platelets (or blood) from another, I trust the Canadian Blood services and all the modern tests we have, but I am feeling very sentimental about it in a sorts. I guess this why they (CBS) choose the marketing slogan “give the gift of blood”. I feel very much like I'm being given a gift, a very personal intimate gift.

Pretend its okay & Hobble on!

2010-01-16T21:27:00.000-05:00

I went dinner and a movie with a friend last night and barely walked out of the theater on my own accord. I knew I shouldn’t have gone because my lower legs had started cramping that morning (just like when you run without warming up) but then it seemed to go away until the evening and I was hell bent on doing something “normal”. I kept having to get up during dinner to shake out my legs and at one point went to check if they were swollen; but they looked perfectly normal? By the time I got home at 11:30pm I could barely walk up the stairs to a hot salt bath; which didn’t do much.

I also started having other “problems” yesterday that I can only assume are side effects. I woke up in the morning with a sore swollen “feeling” neck and right arm, but I assumed it was from my Lupron shot administered the night before. But then the ache started to spread down my whole body throughout the day and by the end of the movie I was joking that even my cheeks hurt to smile.

Today everything feels bruised and swollen, as if I have been beaten by a bat, or taken a tumble down a ski hill – even my earlobes are sensitive to the touch. I have never quite felt an entire body pain like this. It’s unbelievable, and I keep trying to laugh about it, but that hurts too.

Combined with the persistent heartburn and night sweats I didn’t sleep a wink last night. I only dragged myself out of bed, and I mean dragged, because I had a client meeting this afternoon and I need the money. Everyone was so worried about the state I was in there was a family planning meeting about how much pain killers I could take and at what time that would ensure a window in which I could be coherent yet still physically able to walk and drive to my meeting. We also had a back up plan incase I couldn’t drive myself back home.

The last few days have been a reminder never to judge a person from the outside, because you never know what’s going on on the inside, under their clothes and in their minds. I know the lengths I’ve gone to struggle through an evening out because I wanted to be doing something normal. Or to find a work outfit that hides my permacath, a dressy hat that hides my thinning hair, to use every ounce of my energy to concentrate through my morphine mind, and plaster a smile on although it hurts my face.

Sometimes I think I shouldn’t do it. I should let people see the struggles so that they can truly start to understand what living with cancer and treatment can be like. But then I could never take it back and have just a normal dinner and a movie night out.

E, A, M - Stands for "Eating" "Agitated" & "Mean"

2010-01-14T22:12:00.004-05:00

I never did get an appointment prior to this chemo, so there have been many unexpected’s and figuring stuff out along the way; however just like the last big round – things went very well!

On my first day (of 5 days) of E,A,M I learned that one of the chemo’s was to be slowly infused into my body over the course of 4 days, so I would be leaving with a tube the size of a baby bottle attached to me. Surprise! Whatever, no big deal, I'm really so desensitized to the treatments and gadgets I require these days that you could install a port into the middle of my forehead and Id be like “whatever get’s the job done”. For better or worse I'm committed at this point – let’s do this shit!

I did not have any side effects early on in my treatment, so I tried very hard to down as much liquids as possible before I lost my taste buds or ability to consume liquids as has been my deal in the past when everything tastes metallic. Hydration is the key to weathering chemo effects!!!

Towards the end of my 5 days and for a few days after the side effects that really became apparent were all from a steroid called Decadron that I was taking for nausea. I became very aggressive, antsy and starving.

I had allot of nervous energy at night and started knitting again just to keep my hands busy. Between shows and each commercial I’d jump up to get things done around the house, on the computer or forge for my “6th” meal of the day.

Food became so unsatisfying because I couldn’t taste very much, so I ate more, and then I ate spicy, and then I paid for it with the worst heartburn I have ever had. It spanned days until I got some serious ‘not off the shelf’ drugs to help; so I can’t really believe it was just the Indian foods fault, and not another side effect.

The aggressive part was the worst because I knew I was being mean or that my irritability was not real, but I just couldn’t help myself. And I think everyone in the car learned their lesson ‘that day’ about not getting off the highway at “the next exit” when Tam needed some food, peanuts, a stick of gum, “anything” when I announced that I needed to eat “now” without notice! Mum agreed it was all from the steroids and was mildly sympathetic; good thing because most of my annoyance was directed at her!

I know from past chemo’s that there are two stages of side effects you need to get through. The first is during chemo. Your body is shocked by the drugs and you need to fight nausea, fatigue and immediate drug side effects. Then about 8-12 days later you start to feel the effects of the drugs on your body at a cellular level, so your counts go down, you watch for fever and infection, and the real lethargy sets in.

So I'm counting down the days post chemo to see what the effects will be(?) It will likely be a series of unexpected’s and figuring stuff out along the way; however I kind of like not knowing. Like I said, I'm committed at this point – let’s do this shit!

Last minute changes "B" happening

2010-01-06T19:08:00.003-05:00

Over the holidays it was decided that I would have one round of chemo in-between my stem cell collection and my stem cell transplant to ensure that I go into transplant with as little disease as possible. Given that I had such trouble with my hearing from DHAP (and still do) I'm not allowed to have that chemo again because I could go deaf, so the doctors decided on a 6 day round of mini-BEAM.

The day before treatment was to start I got a call from the hospital letting me know that there was a temporary Canadian recall on the “B” Carmustine and that the doctors had decided I was to go ahead with the other components E,A,M and it should be just fine – I'm sorry what?

They just spent months convincing me that these drugs were necessary to reduce the residual disease from a side-effects versus gains perspective and now when they run out of the drug they try and pass it off to me as a “you didn’t really need it anyways, your treatment should be just fine” perspective. Well I don’t want to have a treatment that is just fine; I want to have a treatment that is the very best for me. You don’t get second chances with transplants, if this doesn’t work my understanding it’s maintenance chemo until death. (Granted death is a long ways away, but I’d prefer cure thanks!)

This really brings up a question I am constantly pitching to my doctors at my hospital, “am I really getting the care that I need, or am I just getting the care that is available?” It’s a huge difference.

In the end the change was just so last minute, and the reality was that there was just no “B” in the supply closet, so I went ahead with E,A,M. But I'm not entirely satisfied with there answers. The truth is I don’t trust that this decision was made with the best interests of me in mind; I think it was made based upon the reality of the recall. They don’t got it, they don’t got it – but should they have got it?

But what are they going to say? “Um ya Tamara there has been a temporary recall on one of your drugs that leaves you totally fucked, but there’s nothing we can do about it.” No way, total hospital liability! They are not going to pitch any complication to a patient in anything other than a positive light because otherwise people would be up in arms and they would be liable for not providing the very best care/ treatment they know of for that patient. So they say you’ll be fine without it.

I hope so because after this chemo it’s straight to transplant taking my chances with whatever amount of disease is left in my body in hopes that it’s not too much. I deserve the very best chance at a cure that we have available here in Canada just like everyone else, not just an okay or a fine chance and I don’t think I'm getting it – but what can I do about it? This is not the way it should “B”.

The only person cancer really affects is you!

2010-01-05T18:27:00.001-05:00

I went into work for 3 hours today just to help out around the office. I didn’t get very much done but that is because everything is so disorganized the smallest task tasks 3 times as long to complete. At least some things never change. I did manage to buy some snow tires and book a visit to a client this afternoon. Days like this I'm glad I'm not “really” working.

Last night I sent out another “this is what’s happening” update to friends. I am sick of answering the same cancer questions over and over and really feel that people are so self absorbed that they don’t read or retain any of the cancer information I do tell them. It’s insulting and I'm doing my best not to get upset. I'm trying to be understanding that its complex – but honestly I haven’t even told them the complex stuff, it’s just that it doesn’t affect them so they forget it and then think its okay to touch base with me every couple of months about it like it’s nothing more than “how’s that new car running?” conversation.

“So what’s going on with the cancer stuff, what kind is it again?” “I just heard you were doing another treatment, I'm so sorry, I thought you were cured?” (Why because you stopped asking about it last year so you assumed I was done with it too?) “So you just had your stem cell collection, when do they take your bone marrow?”

If after 20 months of this shit you still don’t know what kind of cancer I have, and are not reading my updates - don’t even talk to me!

It's all in good cold fun!

2010-01-03T23:28:00.002-05:00

Went night skiing last night because it was supposed to be a mild night; it was -15C but I did alright. Normally my feet go numb and painful, but the boots I borrowed were pretty good. It was my fingers went numb towards the last runs so badly that I couldn’t continue or pry my poles out of my hands.
Once my fingers (and toes) get cold they have no ability to warm themselves, as is the nature of Raynaud's Phenomenon, and it is very uncomfortable when you lose the use of your fingers and can be painful when they warm back up. Allot of people in my cancer group now have the “white finger” syndrome after chemo, plus an array of other circulation problems.
It really takes the fun out of winter sports if you don’t do everything you can to keep your extremities warm... but either way I was really proud of my self for having the strength and energy to ski in-between chemo's!

Much ado about nothing

2009-12-15T17:57:00.000-05:00

The week-end was a bit too much for me. I didn’t get to bed until 3am on Friday night after the Christmas party and then late again on Saturday night after a holiday dinner at a friends. By Sunday I was done and spent the day on the couch not really being able to sleep much.

Sunday night a mild headache started in the front right of my head and stayed with me until the morning. I talked to Mum about it early Monday morning because I was worried it might be a blood clot. Last week the vein in my neck (on the right) above my permacath had swollen and a smaller vein on my shoulder had gone bright blue. The area was tense indicating a pull or a pinch to the nerve. I’ve had blue veining across my chest before when my heart was not getting very much oxygen, so I knew this was something, but not sure what. Then it went away after a few days so I thought it might have been a pull from my lifting decoration boxes last week.

I got up and got ready for the day anyways, but I had a feeling it might not work out. The homecare nurse came to clean my line and it wasn’t working very well, sluggish, and so I decided to give the hospital a call. I put all these things together and she said I should come in and get them checked out. She also asked me if my right arm was swollen and when I looked at it I could have sworn it was, but sometime we see what we want to see. About 20 minutes later I couldn’t tell the difference and wondered if I was crying wolf as we drove to the hospital.

I wonder sometimes if my health continues to be well for a period of time do I make more ado about the usual aches and pains because I'm afraid of being well. Like my mind makes up something so that I can go get checked out and assured that I'm okay? Because after a day at the hospital I slept just fine that night and have felt fine since. No bloodclots!

L.B.D

2009-12-12T23:08:00.000-05:00

On Friday a friend asked me to go with him to his corporate Christmas party on the following Friday at the Brookstreet hotel… yes sir! Pulling a party dress out of my closet last minute was not going to be a problem until I realized “Oh shit the boob tube!”

So I headed to the mall with my mother to find a dress. Mum needed shoes for her party so we alternated stores. I wasn’t having any luck in the dress shops and my big feet were starting to turn green with envy watching my mother’s perfect size 8’s slip into anything she wanted in the shoe shops. After a couple of hours of no luck I thought I wasn't going to find anything and was getting a little run down, as I do. Id wear a nun’s habit if it came in my size and hid my permacath… its holy season!

Then I found it, the perfect little black dress - LBD! And that’s when I started to cry. I actually started to cry, and not just the misty eyes; an all out face crumple snort & sniff kinda cry. I think I was just so emotionally done by then, was subconsciously worried about what’s going on with my hair, and had resigned myself to the fact that I was going to have to wear something ho-hum just to cover up my oddities. And maybe a wig too!

I had resolved myself to just being “clothed” that when I was presented with looking my very best it was so beyond my expectations that I started crying. I guess it’s been awhile since I felt I looked and felt fabulous in anything.

So I started crying and then Mum started crying, and then I saw the price and cried a little more, and then Mum started saying “I’m going to buy it for you, you deserve to look & feel great, I'm going to buy it for you” and that’s when the sobbing became an all out scene and the poor sales lady was just so confused.

Friday morning I knew the hair was done and headed for the salon. I thought Id be going out that night in a wig, but my stylist cut it down and it seemed to look thicker. There are some noticeable thin spots on the sides of my head and at the crown where my scalp gleams through, but nothing a little bit of brown eye-shadow on the scalp can’t hide!

For me having cancer is often a daily lesson in humility, but every now and then I need a break from it. I need to pretend that nothings wrong, get dressed up go out and get noticed for my L.B.D and not my C.A.N.C.E.R

Big Fat Hairy Lie

2009-12-06T22:10:00.001-05:00

DHAP will not make your hair fall out. “LIAR LIAR my hair is jump’n scalp like its on fire!”

Everyone (doctors, nurses, websites) told me that DHAP would not make my hair fall out. There is a list of unusual side effects that say your hair may “thin”; they need to replace that word with flee, run away, escape, take flight, leave, depart, quit, make tracks…. ‘head’ off, ‘head’ out… I'm sure you get it.

About two weeks after chemo I made a hair appointment because I actually felt like my hair was getting too long. Sixty-five dollars later I went home to show off my new do later that evening and ran my hand through my bangs and the hair came with it!

Since then it’s come out every day in clumps. My bathroom looks like I have been shaving a baboon, the cat and I have switched rolls in that he is now covered in Tam hair and needs to lint roller his ass every time he stands up, and I look like I’ve let a four year old cut chunks out of my hair with craft scissors.

I don’t know what I'm going to do? Will it stop, will it all fall out, should I shave it, should I cut it???

Who keeps ringing that bell… I can’t concentrate?

2009-12-02T22:28:00.000-05:00

You know that ringing sound in your ears that comes soon after a rock concert and stays with you into the next day? How about two weeks? Apparently one of the less common, but very serious side effects of DHAP is ringing in the ears and hearing loss… what?... “I SAID HEARING LOSS”... yikes!

All day every day my sound in my head alters from a ringing noise (like just after a concert) which makes me talk loud to others because I feel I have to yell over the sound in my head, or white noise that sounds like static when the TV channel cuts out. The white noise bouts are worse on everyone else because I have to crank the TV, but the ringing is hard too because no one can talk at the same time or during TV because I get overwhelmed by too much sound and then can’t really hear anything well… and then I get pissed about missing what Mc Steamy said during Grey’s.

My hearing also cuts in and out like someone has a remote for my head and is messing with the volume. After two weeks the ringing and white noise has subsided, and this is the more common problem that I continue to struggle with. If the volume goes down in my head I can’t hear what people are saying to me in a coffee shop with background music and have to strain and lip read to hear what my friends are saying. And if multiple people talk at once I can’t hear either. I can’t even chose to focus on one or the other, they just cancel each other out and I hear jumble.

When the volume is turned up its hell! I tried going to the mall the other day and was overwhelmed by the sound of the crowd. Peoples cell phones would make me jump, little kids whining sounded like they were screaming, doors shutting sounded like slams and the overhead announcements had me covering my ears in pain… on top of the regular crowd conversation and holiday music.

We finally had to stop and find a pharmacy to get some ear plugs. They are perfect!!! They cut out all the external noise and allow you to comfortably focus on what the person in front of you is saying. Once I popped those bad boys in everything transformed, it was like floating through chaos blissfully unaware. I keep a set in my purse now all the time, because I still can’t handle how loud a theater movie is, but I have to say this is the way to get your Christmas shopping done in a mall, hearing impaired or not!

Feverish Celebration

2009-11-23T23:29:00.000-05:00

Well I made it until the wee hours of Monday morning (day 12) before the fever hit at 3am. It was low and I felt perfectly fine so I waited until 4 am to call it in. The on-call doctor said I could take my time coming in so I went back to bed and woke Mum up for 5am still feeling good. On the drive in I started to feel hot and sick and by check-in at Emerg at 5:45am I was almost passing out. My face was burning so hot that I had a bag of ice on it that my mother had to hold in place and the nurses had to change about 4-5 times because it kept melting that morning.

Emerg did the bloodwork and started me on general antibiotics while we waited for results and admitting. They had me admitted from Emerg into a bed in Hematology in an hour (awesome!) and that’s when they told me Id be there for a couple of “days”. I didn’t even bring a bag because I thought Id go in, get some antibiotics and be sent home in a couple of hours. That’s about the time I got “grumpy”… that’s not the word my mother would use, but her version is indecent and totally over exaggerated!

My neutrophils were .3 so no wonder I felt like shit. I slept most of the morning so I sent Mum home with a 3 page list of stuff to get and instructions on how to wash my laundry that I just had to have for my stay (apparently I'm a vicious dictator when I'm feverish) .

Did I mention it was my birthday? Did I mention I was dirty and hairy? With collection on Tuesday and I wasn’t feeling good Sunday night (now I know why) I had planned to take a proper shower Monday to wash my hair and shave my legs, in preparation for Tuesday. No luck! And of course everyone wanted to look at my legs to see if they were swollen, and wouldn’t take my word for it.

It gets better… bring on the ass exam! That’s right I got the same thing for my birthday this year as last year – sadistic or what! I guess a few days back when I got a little (a lot) dried up, I tore inside and that created a source for infection to get into the blood… “the body’s cell count is just so low it can’t handle its own issues” no shit!

When I set out for the hospital that morning I thought it might be a few hours – the routine fever. Get some blood work, antibiotics, go home. Nope I went in on my birthday a hot vicious laundry Nazi with hairy legs, a sore ass and greasy hair and in return I got an all-inclusive stay, antibiotics and an ass exam! Oh ya and cake… they gave me a piece of cake for lunch. It was a celebration after all.

Fever Watch

2009-11-21T22:57:00.007-05:00

Met with a doctor (one of the randoms I now see in the BMT clinic) on Friday for my post-chemo follow up appointment on day 9 of my 14day schedule that makes up the Stem Cell Collection Phase.

Day 1 & 2 are chemo days (done) and then we wait 7 days while my blood counts steadily drop all the while taking injections to grow stem cells at the same time. By day 11 & 12 my counts are at their lowest and the stem cells are at their highest, so then we collect day 13 & 14.

BMT likes to meet with the patient on day 9 to check for fever and caution them to be on constant fever watch for days 10, 11 & 12 until Tuesday’s collection.

Apparently almost everyone gets the fever because their counts are just so low they can’t fight off any bugs. But it’s more about all the bugs and bacteria we already have in our bodies that will lead to infection and fever than the risk of picking bugs up from someone else. The body’s cell count is just so low it can’t handle its own issues.

Well I'm full of un-handled issues (ha!)... so I'm on fever watch:

Side Effects, Direct Effects… Cure Effects?

2009-11-19T23:13:00.000-05:00

This past week it’s been all out about the side effects, which really in the grand scheme of things are not that bad.

I noticed yesterday that the itching behind my knees had stopped and that I have been able to drink more and more on my own again. The itching started up again over the Fall and I just knew that the cancer was active and that the next CAT would show growth; it’s always been my key symptom. Wonder what this means?

Itchy legs all night has been replaced with hot flashes. I have had them in the past from the lymphoma and a drug called Lupron that I take, but WOW are they back!!! It’s a burning heat that radiates from within that makes me want to chug a slushy and shove a Popsicle up my ass – anything to cool the insides of me down!

After chemo brushing my teeth is a miserable experience for days because the toothpaste tastes disgusting to me. I mentioned this to my Aunt and she was like switch the flavor – duh! I switched from mint to cinnamon OMG I can’t tell you how stupid I feel. All last year during chemo I would dread the days every two weeks when toothpaste made me gag twice a day, but never once did I think about switching the flavor. This is why one needs caregivers, you’re too stupid to help yourself sometimes!

I let my bowels get dried up again just like last time and have really hurt myself when eventually I did go. As the nurse put it, like passing a concrete brick – ouch! I'm taking a spoon full of aloevera juice every morning now that is sure to make things softer, but the damage is done. No one knows that this is the most common hidden ailment for people on chemo; everyone thinks it’s the puking – nope other end!

This blast of chemo really dried me up inside and out; and I'm used to combating chemo skin with an arsenal of expensive oils and creams, but I still peeled. My face has been peeling all week, especially around the eyes, which makes it impossible to put cover up on. It’s not like after a sunburn, more like the delicate surface of a fish when you touch it and scales rub off – really gross!

If anyone has anything to say about it I won’t know, I can’t hear them. A ringing started in my ears a week ago that wont let up. Sometimes it’s ringing other times it’s white noise (like static), either way it’s consistent. It’s starting to wear me down and makes every task harder when your head is a jumble of sound.

I lay around allot. Just waking up and getting breakfast feels like a marathon most mornings. And I have to remember to rise slowly to let my blood pressure catch up. It’s still very low and I have daily “faint” episodes that keep me horizontal. It’s getting better the more I drink on my own.

Cancer now has very little effect on my body, it’s the cure that’s affecting me terribly!

What's in your Designer Bag? A bag of Saline - you?

2009-11-17T00:06:00.003-05:00

They wanted me to carry my bag of saline around in a fanny pack… I don’t thinks so! I had the perfect little Jimmy Choo bag that went with me everywhere because that’s where my bag of saline went with me – everywhere!

Day 3&4: looked worse than it was!

2009-11-16T23:54:00.003-05:00

I think we did something really smart in that we followed a strict medication, foods & fluids schedule. With nausea and pain (I was still sore from the permacath) it’s important to stay ahead of the feeling by have the medication steady in your body.

Every morning my Aunt woke me up at 7 am to take my nausea meds with a bowl of oatmeal in bed. Then I slept until the next pill around the time the nurse would come and change my bag of saline. I didn’t feel like eating much because of the metal taste in my mouth, but my Aunt made sure I ate just enough and drank just enough at the right times. We also set my alarm in the middle of the night to take my pills. So I never went too long and I have to say this big bad blast of chemo went better than expected.

This type of chemo (DHAP) can be really hard on your kidneys so they order at home hydration for you for about 3 days after chemo. I stayed on it for 7 (plus I had already been on it for 3 or 4 by that point) because of blood pressure levels and I'm not a very good drinker after chemo. I knew Id never be able to gulp down the 8+ glasses of water a day required to care for my kidneys, so I stayed on the hydration to "puff" me out... I mean help me out.

Chemo Day2: 3hrs of something toxic in the morning, break for 5hrs then come back for 2hrs of something toxic that evening.

2009-11-14T23:50:00.000-05:00

I slept for the morning chemo because it was an early start and then lay around the house for the afternoon until part two at 5 pm. I was tired, but not nauseous yet; I did have the metal taste in my mouth though. I don’t really remember part two except that I was starting to feel nauseas by the end of the day and asked for a Stemetil injection to be proactive; not a good idea!
I forgot that Stemetil is the anti-nausea drug that makes me feel strung out and twitchy like a junkie. It’s worse than being nauseous, because I shake, twitch and feel the need to pace the room like a character from TrainSpotting waiting for the dealer to arrive. It’s a miserable existence that you can only ride out once it’s in you.

Chemo Day1: 8hrs of “platinum”... but I'm worth it!

2009-11-13T23:44:00.002-05:00

I took a wonder drug called Emend just before treatment started. It is the latest anti-nauseous drug out on the market. It cost me $130. for 3 pills (3 days). It was supposed to be covered but "surprise surprise", someone at the hospital didn’t put in my application soon enough, along with my Nepogen and so I had to pay for the Emend. It was worth every penny though!!! (but I'm working on getting those pennies back)

The chemo made me very hyper and I had trouble sticking to any one task (reading, movies, email) so I mostly socialized. Later in the day my legs felt like they were going numb, as if I had rubber bands tied at the top of my legs. There was nothing wrong with my legs and they looked just fine, but the sensation was really messing with my head and I kept getting up to shake them out. By the end of the day the sensation was making me a little crazy and I jogged on the spot for about an hour straight that evening at home watching TV.

How low can she go?

2009-11-11T21:43:00.000-05:00

(just above coma - nice!)

I forgot to mention that I did have a little fainting incident on the way out of the hospital after my permacath insertion, but then again I'm a fainter so what else is new. I'm also a low blood pressure kinda gal, but this day my BP dropped to 52/65, normal is about 120/80 – my normal is about 70/100 if I'm lucky. So I Lay down had some toast and peanut butter and was sent home. On the way home I begged Mum to stop for chips, Pringles. I never eat chips, I'm a chocolate girl… little did I know my body was craving salt.

I ate the whole tube for dinner. In the middle of the night I got up to go to the bathroom and almost fainted again. In the morning I almost went down again when the nurse came to change my bandage, again with the low BP. So we called the hospital and they asked me to come in so they could investigate the permacath but really only found a fast heart rate and very low BP. The doctors decided to start me on hydration at home the following day.

A paramedic friend of mine suggested it might be something called a vagal response, which as something to do with the Vagus nerve getting compressed and lowering your pulse and BP at the same time which causes you to feel faint. I looked it up and the spot on the nerve is right above where my Permacath enters the artery in my neck. Maybe it’s pushing on that?

On the way home from the hospital I placed what was likely my 10th phone call in two days to the CT scan booking office asking them where my CAT scan was. They said they didn’t get the request from the coordinator (no shit) until the day before, but they could squeeze me in on the 12th. I asked her to read the part again about it being urgent that I have a scan before the 12th because I start chemo, and they asked me to come right over. So we turned the car around and drove back to the hospital.

I drank the contrast dye over the course of two hours prior to the exam but the technician couldn’t get a line into me to inject the dye. And they are not allowed to use permacaths for dye. I still did the scan, but I was disappointed that the scan will not be as detailed as it could be. When these things happen I feel so disappointed in myself, I can’t help it – damn my veins for giving out on me, damn my low blood pressure, damn my fainting, damn my cancer. The ultimate betrayal was the cancer, so I feel like my body owes it to me not to let me down with all the little things.

What does one boob, "happy juice" & Bob Marley have in common = A Permacath!

2009-11-09T14:00:00.006-05:00

Today was relatively easy mostly because I just told myself it would be - and it was! There could have been lots of things to get concerned or wigged out about, but I chose to just roll with it and it was all good! I didn`t even know what a Permacath was exactly or what it would look like – but I gotta have it so who cares.
I did have some trouble getting an IV line in my hand. I told the nurse she should go to the last spot I have in my hand that gives blood but it quickly turned into credentials war ``I’ve been a nurse for...`` ya well ``I’ve been a patient for...`` and of course I lost the fight so three painful tries later we got a line in – in the spot I had originally suggested. So I guess I won the war... Id gloat but my hands are too sore to type much!

The surgery was orchestrated by a room full of male nurses and doctors - and my exposed boob! There was allot of prep and cleaning and then it all gets fuzzy. I do remember the flesh freezing needles, they hurt quite a bit but then the IV `happy juice` kicked in and everything was good or should I say ``everyting was irie``. It seems to me that the whole thing took about 10 minutes, but I don`t recall anything about those 10 minutes. It`s as if I am aware that they happened and I was present but I can`t remember a thing about that time. And in fact it was probably more like 20 minutes had passed but my perception of time is off too.

On the way out I was feeling pretty good and couldn`t stop singing ``I shot the Sherriff`` in my best Bob Marley voice over and over again. I guess it`s a successful surgery when you get a room full of men handling your gear and you come out singing reggae tunes!

On the way home it occurred to us that I wasn`t given any postcare instructions... with all that singing I forgot to ask. How am I going to wash around this hardware? When do these stitches come out? Who takes them out? The HomeCare nurse is coming tomorrow to change my dressing and flush my new line; I hope she knows... maybe if I sing her a little Bobby?

I've got Lady Luck on my side!

2009-10-31T23:02:00.000-04:00

I tried to party as much as I could before treatment started up again! Happy Halloween!

This Ass is kick'n Ass and takin names!

2009-10-28T20:20:00.001-04:00

The coordinator called today to tell me the November start date she gave me last week was tentative (bullshit) and that we are just going to have to start November 12th (you’re an ass) and that’s just the way it is (I'm going to kick your ass) so we shall see you on the 12th (Sucks to be my ass!).

She saw me the very next day “surprise” here is my list of demands. In a round about way I put it to her that I was going to accept the November 12th start date (like I had a choice) quietly but that I really wanted a new CAT scan to assess where my disease is currently at and that I also wanted my permacath put in ASAP before all the needles started.

I want to see if my cancer has grown or spread since my August results. If so I don’t have any problems throwing the word “negligent” around to the hospital administers and anyone else who needs to know. It’s about time I start looking out for my own ass!

Who's the Horse's Ass now?

2009-10-22T19:58:00.001-04:00

After my September meeting I didn’t here from anybody at the hospital about a start date, but I didn’t call them either. I knew that we had agreed that I would start mid-October, but calling to ask exactly when I start was really hard for me. It was like calling to book a flogging, no thanks!

I waited about a week after returning from Toronto expecting to go into treatment anyday and then finally called the BMT office myself to see what was what. The coordinator told me that since I had asked for a second opinion at another hospital I had been taken off the BMT list because I wasn’t considered “committed” and they were now scheduling for end of November. That’s total bullshit and I had a series of meltdowns over several phone calls back and forth.

The only reason my doctor agreed to refer me for the second opinion was because I made the case that I was still committed to going ahead with the treatment here and I just really wanted to know what the protocol was like elsewhere – but that unless they had margarita service by men in Speedos at the other hospital, I was going ahead here mid-October. And in-fact you are not allowed to have treatment in another city that you do not live in provided the city you live has the proper facilities – which mine does. So everyone knows I can’t damn well have treatment anywhere else.

I think they screwed up and tried to place the blame on the patient; which the coordinator did a great job of that telling me that I aught to have known this would happen and pointed out the original delay from October 1st to mid-October was mine. She played into all my fears as I sobbed over the phone that no one told me this could happen otherwise I wouldn’t have done it, every day my cancer is growing, what if this delay affects my outcome – my god what have I done.

Well she pulled out the “that’s right you screwed up sweetheart card, but I'm gonna help you out” card and managed to squeeze me in for a November 6th start date. I thanked her profusely for saving my ass. Only after a day of shaking and crying did I start to recall the September conversation with my doctor and the things other nurses had said and realized this was a booking error, not a Tam error. That coordinator was the one that got my ass into this situation, and now I feel like an ass for thanking her when she “fixed” it.

But that doesn’t change anything, if there’s no room at the inn, there’s no room inn. So I wait… but now I'm pissed… I wish I could kick some coordinator ass!
Ass, Ass, Ass!

Costly Opinions

2009-10-12T19:13:00.000-04:00

Mum and I drove to Toronto for a second opinion on my proposed treatment outline here in Ottawa. The drive up was fun in that I got the special edition CD of Sergeant Peppers Lonely Hearts Club Band to sing along to for the drive.

The Princess Margret Cancer center was pretty swanky, but packed full of people which always makes me sad that so many are afflicted with cancer. The doctors that I saw were like the designer guys and they had pretty much the same thing to say as the doctors here, but with way more style and flair!

One thing they did mention was that my CAT scan from Aug 25th is now out of date and I really should have a new one to get a current picture of where my disease is at before I start my treatment. I'm not big on extra radiation, so we shall see what the doctors here have to say about that.

Driving home the following day it was a perfect Fall day so we took the old hwy through all the country and stopped in one town for a massive Fall Fair. We both love Fall, fairs and the smell of barn animals (ha!) so it was to be the highlight of our trip. Sadly the hwy patrol officer that caught Mum doing 55 over the speed limit (and failure to show insurance) kinda soured the day and trip budget.

Revenge of the ChemoBrain - Part Duex

2009-10-07T16:37:00.000-04:00

I came home today to find my Mum opening a package; a gift from my Aunt. I said “that’s nice, why did she get you a gift?” I just burst into tears when she said it was her birthday tomorrow. I was so upset, embarrassed and angry. Not only had I forgotten her birthday, I couldn't even remember when it was even when I tried to think about it. The information was just gone, it was as if I never had it.

I'm forgetting very basic fundamental pieces of information all the time now. It’s very scary.

Two days ago I drove to the bank to pay my monthly line of credit and forgot my pin number. I tried everything I could think of, which only managed to shut down my card. Yesterday I had to go into the bank and explain why I couldn’t remember my own pin to get it reset. On the way home I couldn’t remember how old I was, and had to seriously think about whether I was 28 or 29.

It's time for Lymphomanics!!!

2009-10-01T22:26:00.000-04:00

I haven’t been blogging for awhile, but I have a couple posts to put up to fill in the blanks - coming soon. I didn’t completely abandon my cancer world, I was just focused on other aspects of it for awhile.

Last year I joined the local LSGO (Lymphoma Support Group of Ottawa) and after attending a couple of their meetings I volunteered to do a couple of things for them to get ready for the following year of meetings; like putting together their monthly meeting flyers to post in the hospital. I have also been working on putting together a proposal to start a young adult chapter of the LSGO called Lymphomanics.

The group will meet quarterly for an informal social, or meet & greet if you will. The goal is to create a setting where young adults (a major demographic for Lymphoma patients, especially Hodgkins patients) can get together in a ‘no-pressure to share your feelings, be bombarded with medical information, try to identify with 60 year old patients or listen to stupid lectures environment’, and just get to know someone else who is going through (or gone through) the same things you are. All this in the hopes that people will exchange numbers or emails and keep in contact with each other for support.

I don’t know about the rest of the world but here in my neck of the woods it is very hard to find another young adult with Lymphoma to identify with, it’s all old patients, doctors, nurses and therapists! I need someone who understands about losing my hair, my identity, my social life, paying bills, not having insurance, gaining weight, feeling like no one will ever want to have sex with you again and watching all your friends lives progress around you. A ‘60 year old married man, with grown kids, grandkids, income, pension, savings, insurance, stopped having sex 10 years ago and didn’t have any hair to speak of anyways’ is just not going to get my cancer woes.

Young adults need to support other young adults the way we wish we could be supported. So that’s what I’ve been working on:)

BMT#1234 - 5'10" - F - xxlb - DOB 11.23.80 - 29 - Hodgkin's Disease - Nodular Sclerosis - Name: not important!

2009-09-23T16:19:00.000-04:00

The BMT (bone marrow transplant) planning meeting was pretty uneventful. It was with a different doctor who explained to me that my care is switching departments and I am now under the BMT department which consists of seeing whoever is available as I am managed by a team now. The doctor wanted me to start treatment in two weeks which I told her was impossible. I have so much work to wrap-up, care to set up, benefits to get reinstated and I want a second opinion on the treatment outline. So we decided I would start mid-October.

I spoke with my hematologist about getting a referral for a second opinion in T.O. He was reluctant and really tried to talk me out of it, but I explained to him it wasn’t personal and it was just something I had to do for my peace of mind. I also want to make sure that I'm getting the treatment I need, and not just the treatment that is available. Doctors are not very receptive to this.

I'm feeling a little abandoned by the people that have been treating me. Now that I'm part of the BMT clinic I have new doctors and a new social worker. That will be the third social worker I have spoken with throughout my treatment. I have the best rapport with my current social worker, I don’t want to switch to anyone else; same thing with my hematologist. I’ve spent almost 2 years establish a trust with these people and now when I need the benefits of that relationship and trust I'm switched to new people; and they wonder why I want a second opinion – way to make me feel like a number!

Ottawa Regional Cancer Foundation Grape Stomp, Team: Lymphomaniacs!

2009-09-21T15:32:00.004-04:00

raising funds for cancer research!

I don't have time to fall apart!

2009-09-17T15:59:00.000-04:00

It feels strange to be planning something fun and interactive with others right now (Sunday stomp) because I'm a mess right now. I am just barely holding it together. I had a blow up with my mother last night after having one on the phone with my grandmother. I'm feeling very alone and resentful of everyone right now.

I didn't sleep a wink last night (which makes this a 4 day stretch) yet still I had to be up early today for a BMT planning meeting at 8am. Then I have spent all day in and out of client appointments trying to hold it together at work. If I'm not busy I’m fighting off tears; so I keep busy!

Part of me wants to talk about it another part of me does not because I feel like I’m going to have a meltdown once I get talking (and crying) and I don't have the time this moment for that. I’m back at the hospital bright and early again tomorrow morning and then a long day at work, so I just can't fall apart right now. I’m going to schedule my mental breakdown for sometime next week.

It is hard to keep up the facade of being okay. I haven't told any of my friends or work about this (going back into treatment) yet. Again mostly because I feel like if I talk about it Ill fall apart, so I’m waiting until I feel emotionally stable again to say what needs to be said. I also will need an incredible amount of help from people this time and I’m afraid to ask them for help. I’m afraid to ask because I’m afraid they will let me down. I don't think they will get the gravity of what is going on and what's going to happen. I don’t think I do either.

Look who just got back today, them wild eyed cells that had been away...

2009-09-11T15:25:00.002-04:00

My scans show the cancer that was left has started growing again; time to go back into treatment again. I'm not surprised, just really pissed… and not even pissed about the cancer, more so about being given this break. This time off has been an illusion of normalcy.

The problem with a false sense of normalcy is that it feels like you have to walk out of your life all over again when cancer rears its ugly head - again. Actually it’s worse because this time it feels like a failure, like you failed in keeping the cancer away. The first time wasn’t your fault; you didn’t know it could get you too, but the second time well you should have been looking out, keeping watch, fighting the good fight. Now it’s back – you failed, normalcy over!

I don’t want to tell anyone yet, but they haven’t asked either. They too have moved on. I'm tellin ya this cancer thing gets old for people. This false sense of normalcy affects us all, patient, family & friends. I just want to be alone with this for awhile, continue my illusion of normalcy a few more days.

Heart Damage?

2009-08-29T11:42:00.000-04:00

I'm feeling frustrated with the cardiologists review of my tests. I felt like I walked out of there with the usual non-answers. He said the heart was not pumping enough blood as well as it could be and that my heart rate was fast because of that.

I tried to combine that with what we knew from the previous tests, my symptoms, and my previous treatment but he acted as if they were exclusive and would not answer why the heart was like this, what it meant, how or if this would progress and what we would do about it. Sounds like every other doctor I speak too.

I'm so tired of giving the doctor my symptoms, having them pacify or play down what it could be, until it is that and then never acknowledging that the symptoms where there all along. I looked up heart not pumping blood which leads to congestive heart failure (CHF), which he mentioned casually, but I have no doubt he specifically did not use this term because of how scary it sounds.

Looking up CHF is awful, I have lots of the symptoms (mild as they are right now) and there is no treatment. The worst part is I’m not even done cancer treatment; I still have so many heart/ lung damaging drugs yet to take.

Cancer Addict

2009-08-28T11:29:00.002-04:00

Walking into the hospital today I observed the construction sign for the addition as future site of the new Cancer Addiction Center. I thought who the hell gets addicted to cancer? And then started daydreaming about an AA style meeting, someone standing up and confessing that they started with a mild skin cancer but that wasn't enough so they got into lung cancer and then a little bit of myeloma.

They daydream became so absurd that I started to question what the Cancer Addiction Center might really be... only to reread that the sign was for the future home of the new Cancer Center Addition.

My brain is doing this all the time, making up words, switching numbers, letters and words. It's getting worse, but sometimes very funny.

Kickstart my Heart

2009-08-19T17:37:00.004-04:00

The last hour of wearing my 48 hour heart holter monitor seemed like the longest hour of my life. Funny how the memory of pain and discomfort fades because I'm pretty sure having that giant needle stabbed into my heart last year was worse… but none the less, I couldn’t claw those sticky jumper cables off my chest fast enough. It felt like I had been wearing a tight corset for two days and I just needed to bust out (literally!)

I have continued to have a racing/ random jumpy heart since this whole thing started so I went back to my doctors for an x-ray and then another echocardiogram yesterday. My original echocardiogram showed that the current looping round one side of my heart was a bit “jiggly” as the report put it. Not that I knew until I went back complaining of it yet again.

The original follow-up I received from my hematologist was that my heart was fine. Lesson: Do not get your hematologist to interpret a cardiac report, get a cardiologist. So this time I have scheduled an apt with the cardiologist to discuss the follow-up report. Hopefully we will get to the bottom of this crazy heart thing.

It makes me feel very vulnerable to have my heart acting wonky all the time, more so than having cancer. I never feel like I could drop dead with cancer, but I sure feel that way about my heart. It mostly bothers me when I'm sleeping because it’s always racing, I never feel at rest. It reminds me of when I was a kid and we would be camping in some spooky woods and I couldn’t get to sleep because I was terrified by all the night noises and that there was some dude with an axe right out side the tent.
Ya like that, it feels like I'm scared all the time and my heart is racing except the only scary thing in my bedroom at night is likely me – bed-head, ugly pj’s, morning breathe = racing heart?

I also get what I can only describe as a surge or a whooshing feeling in my heart randomly. Anyone who has ever had a picc or port might understand this, it feels like when the nurse would flush your line with saline really fast and you could feel the whoosh of fluid into your heart. Except there’s no line now, so where is the feeling coming from?

I also have an overall heaviness in my heart that is hard to tell if it’s my heart or lungs. When I exercise I feel I reach an exertion limit where I know my heart and lungs just can’t do anymore no matter what. Sometimes if I talk too long or get laughing to hard I start to cough, and other times I just have a general ache and prickly stabs from the top of my heart (where the cancer is left) that bother me. But these seem mild now compared to the discomfort of the holter!

get some fu@kin help, you need it...........

2009-07-24T14:05:00.001-04:00

Today was a two therapy session day. I met with the social worker in the morning and my therapist in the afternoon. By the end of the day I was thoroughly talked out and wrung out.
Talking to a professional is very purging, and since then have been feeling a bit more inspired. I'm telling ya, talking can be so healing. And not just to your friends, try someone bias that is paid to listen to your emotional vomit. Again totally purging!
I always thought finding the solution to a problem was the answer to the worry, so I spent allot of emotional effort seeking the answer. But I'm really seeing how the process of articulating the problem can be just as valuable as the solution in elevating the worry.

My current Theme Song:

2009-07-20T13:59:00.000-04:00

I can't style my new hair... today I looked like Julie Andrews opening scene Sound of Music... "how do you solve a problem like a cowlick, how do you catch a curl and pin it down?" or "these are a few of my hairest things..." or how about "when your bangs bite, and the iron stings, when it's all a shag... I simply remember I was formerly bald... and then I don't feel so bad!"

what would Tamara do?

2009-07-01T21:26:00.003-04:00

I'm lost and I'm not feeling very good about myself lately. I'm doing everything right, but it just feels all wrong. I get up, I go to work, I eat well, I exercise (not as much as I should – but that’s no the point… in-fact that’s pretty same old same old) and I socialize, I go to the movies, I make inappropriate jokes about what people are wearing and I flip off slow drivers… you know the same shit I always did.

I’m the same, but I'm not the same. There are so many little ways, mannerisms, thoughts and actions that I take that are perfectly normal for the situation but I'm surprised they came from me. I’ve changed, and of course things around me are always changing but my reliable reactions and responses have changed. I find myself thinking “what would Tamara do?” because it’s not second nature to just do it.
In this scene Tamara will be playing the role of Tamara, wow she is good… just like the real Tamara; you’d be hard pressed to tell them apart.

It’s hard to feel like you’re really living when your playing the role of who you used to be until you figure out who you are. This feeling of not really living, rather just existing is with me constantly and is perpetuated on so many levels. It starts with not having a plan. We don’t know if the cancer is gone, and if it is, we don’t know if it’s coming back so I'm just waiting.

How do you get up and get involved in any aspect of life when you never know when today’s plans will change or where tomorrows will take you? I don’t work like that; I need larger plans and goals, so I am really struggling on a fundamental level and existing CAT scan to CAT scan.

The funny thing is I didn’t really know that about myself until now. Well I did and I didn’t. I spent allot of mental energy laying out life plans, yearly goals and weekly tasks and beating myself up when I wasn’t focused enough to make get to those goals, plans and tasks. I always felt Id be living better if I did more of this and followed more of that, I had no idea how much I was “living” until I was just existing.

Now that I am physically able to get a life again I wonder what’s the point? To everyone else I look great and I'm doing good, but I don’t feel good; I'm lost. I need a plan; I need a plan… what would Tamara do?

Ridin the Dragon 6 months outta chemo!

2009-06-03T23:06:00.002-04:00

What do you do when you find out you’re not going to do more chemo? You find another way to kill yourself…. It’s called dragon boating!

I let the news soak in for a day or two and then decided I better just throw myself back into life before I lost my nerve. First thing first was to start working again. I was a little nervous about jumping back into things and not really knowing what I was doing, but my motto has always been “fake it till ya know it” and that seems to be working well.

Second thing was to get my body back into shape and try to feel like I was being proactive about maintaining my health. So what do you do when you’re feeling weak, tired and outta shape, join a high performance activity – not!

Halfway through my first practice I was sitting in the back of the boat, in the middle of the river, wondering ‘what the fuck was I thinking?’ That’s pretty much how most of my practices went for the next six weeks. But every practice I got better. I got stronger and stronger, and by race day I was confident I would finish each race without throwing-up on myself. (What can I say we all have different objectives when competing?)

This was also another fake it till ya know it moment in that I didn’t tell anyone on my team that I have cancer. I really wanted see if I could pull off “normal” again, I certainly don’t feel it, but I’m fakin normal until I feel normal again!

Stay of Execution!

2009-05-07T19:04:00.002-04:00

After all that I met with my hematologist to look at my latest CAT scan. First request, get my PICC line put back in ASAP and then discuss a treatment schedule so we could start coordinating my caretakers for the up and coming BMT this month.

Except the first thing he said was that “the CAT scan looked good, the mass has shrunk further and I think we’ll hold off on the BMT for awhile… I’d like to go with the wait and see approach” “See you in 3 months.” Whoa wha? It seems while I’ve been off planning for the worst my body has been givin em her best.

Funny my first response was not relief, it was annoyance and then guilt. But I’m ready! I’ve done allot of emotional prep-work over the last couple of months coming to terms with so much uncertainty and fear about what could happen during the BMT and then finally hit that “I’m ready, lets do this shit whatever happens happens” place… and nothings happenin! I should feel relief, but I feel emotionally jilted.

I feel guilty now too that things are going well. My parents just paid for a bunch of babies-on-ice, my Aunt just took me on a “one last hurrah” trip and my ‘everyone’ has been weighed down by my BMT news in Jan. I feel like I’ve cried wolf…. But it wasn’t me, it was the cancer! (sure, sure)

Whew… now that I’ve got the doubt outta me I think I can move into my happy place… at least for the next 3 months. I’m gonna make tacos and PinaColadas tonight, pretend like we’re celebrating my ovaries (what you don’t have family dinners like that?) and then casually tell them “I’ve refused to go into treatment this month!” and watch their faces drop… tee hee!

Being bad about good news is so much fun sometimes;)

Babies on Ice.

2009-05-06T18:47:00.002-04:00

(Home from my Drug Run to Montreal)
In lue of further treatment (DHAP, BEAM & BMT) I decided to have some eggs frozen. After the first rounds of chemo my ovaries were not doing so well, “sluggish” was the word used. (Like they were hungover Given that the new chemo cocktails were going to be stronger this time I didn’t feel that the Lupron shot was going to be enough to save the ladies this time… time to find a new nest.

It was a rough process because you’ve gotta have eggs to freeze first. The average woman my age produces about 15-30 egg/follicles/ova/whatever a month but once they get to a certain size it triggers ovulation and then through ovulation only 1 (or 2) eggs survive to become dominant and ready for fertilization. I kicked up 2… just 2 and only from one ovary. .. the other bitch was still passed out.

There was some suggestion that they may recover as time went on, but I was running out of time. I managed to delay my BMT schedule until May, but that’s as long as I would go and needed to get some eggs out before then.

I contacted the McGill fertility clinic in Montreal because Ottawa doesn’t offer these services yet and started planning in Feb. Once we figured out my cycle for May I started hormone injections at home prior to collection to help induce more eggs, the more collected the better the results later. But I should mention in March I took it upon myself to start a supplement called Vitex that assists with fertility and saw my own egg count go up each month. Crackalackin!

Things progressed quickly and I only had to do injections for 9 days… only. These ones were twice a day and stung like hell. The collection was easy – 10 minutes! It’s all the prep that’s work, daily injections and driving to MT every other day for ultrasounds that’s not fun at 5am.

Collection day was a bit of an ordeal in that they couldn’t get an IV line into me. As usual my veins are toastitos and we can’t get fluid in or out of them without trying a few different spots each time. After 1 ½ hours, 9 painful tries and 2 faints (Mum fainted too) we got a so-so line in my hand for a 10 minute procedure. It worked just long enough for me to receive a local and then collapsed, and my hand bubbled with saline. My hands and arms have bruises and blood welts, I look like a junkie.

So that’s enough of that, Ill be asking the Dr. for my PICC line back in ASAP before any tests for the BMT start. (Who would have though “I” would be begging for it back!!!) I’ll meet with him tomorrow to look at my CAT scan and get this thing started. But first I need to go look up what these new chemicals are going to do to me, I feel like I’m ready for it now… got all my eggs in their basket.

Oh ya… 5 eggs in total! Humpty, Benedict, Sunny, Quicha & Huevos… the Spanish egg!

Cancer can be a real Drag!

2009-04-26T00:20:00.001-04:00

I went to a Drag Queen fundraiser for the cancer society last night. That’s right, even Drag Queens get cancer!

At the end of the talent show the host, a cancer survivor, (also a Frenchmen and a Drag Queen) said his very dramatic thank you’s and shared his story. It was a very surreal moment. This emancipated man in a bad red wig with hideous make-up, red heels, camouflage pants and a t-shirt that said “I (heart) Solder Boyz” across his fake boobs was sashaying up and down the isle waving his hands and carrying on about the severity of cancer.
It reminded me a lot of the end scene in the Rocky Horror Picture Show where Dr. Frankenfurter sings “I’m going home” boa and all. And all I kept thinking was this guy/girl represents cancer!!!

Well yes he/she does! Cancer doesn’t care what colour your skin is, whether it’s God, Buddha or Vishnu, the size of your jeans, or who you fuck… no one is immune to cancer! The faster we all get that through our head (including me) the faster we’ll find a cure.

One Last Hurrah!

2009-04-20T21:33:00.001-04:00

My Aunt sent me an email 2 weeks before Easter saying “let me take you away” and so off we went! Although that restless ‘I’ve got to get away’ feeling had died down from the ‘Id chew my own foot off its leash if I only had somewhere to go’ feeling I had in February; I still welcomed the escape.

Planning to fly standby we hoped we could make it to Spain so I spent a bit of time looking up things to do and see. Then very last minute we discovered that our options had narrowed to London or Puerto Rico… in April you go to PR, not rainy LDN.

At the airport we arrived last minute travelling carry on, breezed through security, got upgraded to executive class and once we were high in the sky I realized I didn’t know a thing about Puerto Rico except that most Puerto Ricans live in New York.

My Aunt had thought to bring a guide book which I quickly outlined way too many things for us to do within a couple of days, but we gave it our best shot. Every day was a busy day of walking, trekking and hiking around PR… which for me often turned into trudging. There were so many times when I should have stopped, slowed down and taken a break but I pushed on (usually up hill) and arrived everywhere a sweaty breathless mess; but I arrived.

I’ve just been so desperate to “do”. “Do” anything! I’m a “doer”, and I’ve been “doin” nothing for soooo long I really just wanted to be as active as possible, but my physical limits were apparent even as I trudged on past them. But I would do it all again and more as I had a great time and got to see (and “do”) so many things that will carry with me into the coming months of chemo boredom.

Choose Your Own Cancer Adventure

2009-04-15T23:39:00.003-04:00

I have been thinking a lot about life and death lately… mine that is. I don’t have the same intuitive certainty that “I will make it through this” that I had when I was first diagnosed and facing 8 months of chemo. That’s not to say I feel that I will not make it through, I just simply don’t know this time the way knew last time. I have nothing deep down guiding me.

I do however feel that whatever happens is not entirely up to me anymore. Which is a hard thing to lump! I’ve never been a real “que sera sera” kinda gal; more like a make your own destiny, manage your own shit kinda chick. But if this all had been up to me I would have beat cancer after the first round, so perhaps it’s not all up to me?

So I’m prepping for both outcomes. Which is a really odd thing to be doing! It’s like I live in a choose your own adventure book where I’m starting out along one story and then with a flip of the page ill have to very different endings. Go to pg#46 for life or pg#89 for death. Except up until this point I was reading the book, now someone’s reading the book to me and choosing an ending. Surreal.

On the one hand I’m doing things to prepare my body for more chemo like exercising, eating well and taking a boatload of vitamins while making plans for the future during and after the chemo/BMT. At the same time I’m thinking a lot about what I want to happen if I die and what I can do now to make that better for my friends and family. And I’m not talking about writing out a Will or stupid shit like that, because I mean really ill be dead what do I care about ‘stuff’. I’m talking about what to say to whom and how with the assumption that it’s the last things that will ever be said between us.

I haven’t got very far because I fall apart when I try to think about it. Planning to live is easier than planning to die that’s for sure. But they feel equally as important right now, like no matter what; it’s something I have to do. It’s not that I’m afraid of death the way I think others are afraid of it, it’s more that I’m afraid of what happens to everyone else after I die. The things that bother me about my death are; I wish I could have done more, I’m afraid it will hurt, I’m afraid of the effect it will have on my family and I’m afraid it will happen too fast to say goodbye. Like death, they’re all things I can’t control.

So no matter what it’s I book I feel I have to write, so to speak, but I hope I’m not setting up the plot for a bad ending.

My New Theme Song:

2009-04-06T21:32:00.002-04:00

http://www.youtube.com/watch?v=UYIUYzbYeKA

Dude - Where's my Car?

2009-03-15T23:55:00.006-04:00

I stepped outside and didn’t know where to go – I had no idea where my car was! No idea! I gave it a moments pause, like when you walk out of the mall and think “oh shoot where’d I put my car?” kinda pause; and nothing! Nothing! For 10 minutes I tried everything I could to trigger a memory of where I had parked the car just one hour ago. I walked up and down Elgin Street lost while other people hurried by drunk, laughing, and happily knowing where they were going. I was sober, I was not laughing, and I was miserable because I had no idea where I was going.

I remembered leaving the other bar and the three of us laughing and talking as I drove up to the next bar. I remembered us circling the block once and then nothing. I tried to think about how I parked the car, was it in a spot or on the side of the road? Which direction did we walk from? How long was the walk? Nothing! It’s the worst feeling; a chunk of your memory is gone, just gone. It was one o’clock in the morning and I was standing on the sidewalk not knowing what to do or where to go. Chemo Brain!

I decided to try walking up and down some of the closets roads, because I had a sense that we didn’t park far away, but I didn’t know if we were north, south, east, west – nothing! I thought maybe a landmark might jog my memory, or I tried to recall what we were talking about in the car – anything to bring the experience back, but it was gone! GONE!

In the end it was my car flashy thing that found my car when I saw the lights, not me. I was not able to draw upon one single flash or speck of memory about parking the car that assisted me in finding the car. Thank god I have a new car with a keyless lock flashy thing. Thank god the weather has warmed.

At first when I approached the car I had no memory of how it got there, almost the same feeling as if someone else had put it there and I was surprised and trying to make sense of it. And then a small detail emerged, I remembered waiting for someone else to pull out so I could have the spot, and then today more details. But nothing at the time.

This is scaring the pants off me! This is the second big “memory chunk lost” incident this month, with many little ones daily. What the hell am I going to do with this “fabulous” opportunity at life after cancer when yet another aspect of the quality of that life is being taken from me. How am I going to do my job well? The only advantage I have over another is being sharp, organized and a mind for remembering details. What am I going to do if I can’t even remember the basics let alone the details?

Live Your Truth, the State I’m In & Good Things:

2009-02-12T22:47:00.002-05:00

I realize my blogs are a lot of bitch right now, but I firmly believe you gotta live your truth. And my written truth is always the state I’m in! I’ve noticed there are a lot of bloggers who only write when they have something good or uplifting to share about cancer and their experiences. Ill notice a gap in their writing and then a comeback note that says “sorry I didn’t write for so long, I was feeling really down”; I think this is a real injustice to others.

It’s clear that many have a shared experience of feeling down, angry or lost for a period of time during this process, but many are reluctant to share it. I don’t need a dirty laundry list, but if there’s someone else out there who’s going through this process who wants to share – share! Share the good and the bad, that’s the biggest service you can do for another “patient”. No one wants to be alone in this experience, especially in there problems.

However in the last few months I have neglected to post my “good things”…so…

The one thing (or being) that always makes me happy is my cat. This little old man is especially happy to have me back in my parent’s home at his beck and call. He loves the day after chemo because he gets to stay in bed all day and cuddle, and I love the company! At 15 he is starting to experience some health problems so I’m just so happy to be near him during this time. Pets are such a comfort and a wealth of unconditional love… a sick person must have!

Over the past month I have taken over the household cooking and am learning to prepare all these meals from my clean eating and cancer-free cookbooks. I used to own take-out menus, not cookbooks! Early on I learned that a clove of garlic was one of the pieces inside the bulb, not the bulb. In the end the stew with several bulbs of garlic in it (instead of cloves) tasted pretty good, but our house stunk, our clothes stunk, my car stunk, my mittens stunk, and the cat stunk like garlic for 2 weeks! Nobody liked the almond cookies (aka. dog biscuits) I made, but man am I having fun… I learned how to use a Cuisinart!

So throughout this experience I have not found god, it hasn’t brought me closer to my family (thus far), I haven’t bought into the “everything happens for a reason” inner peace shit and I have chronic moments of ungratefulness, wounded vanity and all out bitching. When I’m done with that I pet the cat, try to kill my family with my cooking and blog about the state I’m in!

Cancer Cash

2009-02-11T20:07:00.002-05:00

Applying for financial assistance is an emotional rollercoaster that one does not really need to be riding during a period of illness or treatment. I just finished with the liaison for OntarioWorks who helps people apply for ODSP, what a great lady! She came out to my house, went over my application and double checked that I was aware of (and accessing) all the resources available to me. At times like this I am pleased with the benefits and assistance available to Canadian’s and breathe a sigh of relief that things are going to be okay.

Two hours ago I was reading an article about a young woman in Windsor who was not eligible for EI or welfare when she became sick with ovarian cancer at 26. She had not put enough time into the workforce for EI, and her family (not her) had money in retirement funds, so “they” were not poor enough to be eligible for welfare. Read: http://www.thestar.com/comment/columnists/article/569272

I know all about this trap of having to moving home because you can’t get enough money from the Govt to support your household bills, yet once you move home not qualifying for enough funds to pay the remaining bills you have because of the household (or family) income they assume you have access too. My family can give me a roof, food and love… that’s it, that’s all.

Between this article and a blog I was reading last night about a 21 year old also not old enough to have contributed into these resources, I’m thanking good this didn’t happen to me at a younger age. I have enough problems trying to get ODSP. And then I get angry all over again. I have applied for so many programs, been rejected, been approved, been given misinformation, been given no information and in general done a lot of leg work for a chicky who’s supposed to be sick.

In the beginning I applied for EI and was told I couldn’t apply for CCP until EI was done and that I had too much savings to apply for ODSP. So I lived off of about ½ of what I needed from the Govt and subsidized the rest from my savings. EI ran out after 15 weeks, I called up and they said I should have applied for CPP in the beginning because it takes 2-3 months to be approved; I could have had both all along! So then I got CPP after EI (again about ½ of what I needed) until the end of my treatment/ now.

Now I have just found out this process will go on longer with more treatment, and I am out of savings – so CPP is not going to be enough anymore. I started the application for ODSP only to be told I could have applied for it when I had savings. Why did I have to deplete my own resources to the point of being at the Govt mercy to get help? If I had been getting what I was entitled to all along I would have been able to use my own funds towards little things I think are important to improve the basic living expenses they provide. Ie. They provide a Kraft dinner diet expense, I top it up to eat organic food and buy supplements. Now Ill have nothing to top up their allotments to cater to my specific needs.

So although I really liked this lady and felt she was helpful, well I felt that way about the people that gave me the mis-info before. You can only hope and trust the person you are assigned to is giving you the right info at the right time, and volunteering things you might not know to ask.

By the way, you hospital social worker won’t offer this up in the beginning (again waiting until your in dire straights and come calling) you don’t need to be paying parking fee’s, they have funds for that. Information I could have used 9 months and $500 in parking receipts ago!

Loose Ends

2009-02-07T22:52:00.004-05:00

I was reading back over some of my posts and thought I should provide some updates and wrap up loose ends.

Breathing problems: My last chemo was mid-Dec with the effects of that round felt between Christmas and New Years. This was the worst breathing spell yet, but I stayed calm and mostly immobile for about a week and when the cycle of drugs started to wear off, my breathing improved. Between my ER visit and now I have had numerous lung/breathing tests, scans and appointments regarding the matter. For awhile the Dr’s thought I had systematic fibrosis on my lungs (permanent scaring) from the bleomycin, but thankfully it seems to be temporary (yet sever) swelling from prolonged use of the chemical. I am breathing normally now, but I still notice a… limited air intake (hard to explain) when I workout.

Doc visits: Too many! Mid-January I had my follow-up CT/PET scan, then follow-up consult with my Hematologist and numerous lung and heart dudes.

Test results: My CT shows the mass has stayed shrunken but not gone. Sometimes these masses never go away completely and scar tissue is left, however my PET showed the mass was still active. The Dr. is not keen on radiation due to my lung/heart sensitivity, so in a few months we will look at BMT treatment

Eating and digestion: Much better and fat, fat, fat! I didn’t have too many hang-ups about food during chemo, I was on the “if you make it, Ill eat it diet!” My yoyo bowel problems are gone, thank god Ill never take my ass for granted again! Except now that it’s working again, it wants more real-estate – my ass is huge! I am so hungry all the time, and desperate for sugar. Is it an unbalance, or boredom?

Medications: None baby, none!!! I haven’t stepped into my pharmacy since Dec, and I will suffer a headache all night before I take one single Tylenol. I just need some drug-free time before it all starts again.

Energy: Unbelievable! There comes a point throughout treatment where you’ve been decrepit for so long, and deteriorate more with each treatment that you almost forget what daily energy is because the slowdown was gradual. My breathing and energy improved daily once the effects of the last round wore off. It was amazing, last Nov I couldn’t carry my own laundry to the basement and by Dec I could barely get down the stairs to the kitchen. Mid-January I was up to low key activities for about half a day, and now I could probably work about a 6hour day. My free laundry service has ended!

Ailments: My arms still ache from the damage to my veins but that’s about it. Dry mouth and dry eyes that caused blurred vision is gone. My crazy heart rhythms have returned to normal and lungs are doing what they’re supposed to. My nose still runs constantly; when will that end?

Looks: My hair is still growing, but slower than before. My skin is still dry and rough. Towards the end of treatment my body felt like sandpaper. I’m still scrubbing away and saturating myself in Shea butter but it’s not quite back to normal.

Vacation: I was too sick and tired to go away for Christmas. We finally went last week to Barbados. I think that was best that we waited a few weeks because I was in much better shape to tour and do activities.

Future: Unknown, uncertain! I really just don’t know what to do with myself right now. Physically I am feeling better and the Dr. suggested I could return to work until my next treatment, but I don’t really have a job I can walk in and out of. It would be bad for clients and coworkers to have to leave again in two months. So I’m trying to decide what to do?

Money: Almost outta coin! CPP pays very little and starts after EI times out. I don’t qualify for any EI top-ups and likely not EI disability. For the last 9 months I have been paying bills from my savings, as CPP only provides about half of what I need to meet my financial obligations. The savings run out in February, so go back to work right? If I work just a little (p/t), it’s subtracted dollar for dollar from my benefits – no gain. If I work a lot (f/t) I lose my benefits and then have to start the application process all over again when I start up treatment again. I’m trapped… fuck I was supposed to be cancer free by now – I budgeted to be cancer free by now! There is no more money to entertain this cancer nonsense any longer!

Cancer Mania

2009-01-15T15:10:00.004-05:00

I started to disconnect towards the end of my post treatment consultation with the doctor. I tried to stay engaged and present so I could remember my questions, but it didn’t really matter I wasn’t listening to the answers anymore. I shut down after “3 more months” and “blood transfusion”. I can’t help it; it’s just the way I am. If the reaction coming forth is too much, I shut it down… I’m a zombie at weddings and funerals; the emotional weight overwhelms me into a quite delirium.

I floated out of the hospital and replaced my quite delirium with quite mania. It’s a crazy I’ve just checked out kind of feeling where everything spins around me and I’m sure I get this “I’ve snapped” gleam in my eyes circa Chevy Chase, Christmas Vacation. It’s not a rage, just a deep revolution inside that it’s not alright, none of this is alright… and I’m gonna damn well make it right! You’re only aware of it when you see your nails have left marks in your clenched fists, your jaw starts to ache from being set or you throw eggs at some bitch’s car who wronged you… that’s another story. Needless to say it’s a real fixated mental divide; sshhh Tammy’s gone to her postal place.

In the car I white knuckled the steering wheel trying to figure out what was next and was lulled further into my mania by the introspective intro to “Won’t get fooled again” by The Who. Synthesizer’s rock! When experiencing a revolution you need reflective revolutionary music, thank you radio gods! As I listened I raged at the reality that cancer can kill me and I raged at my foolishness, and arrogance in thinking that it wouldn’t. I was so sure that eight months of chemotherapy would be enough and by February I would be smug with my answers “yes, that’s right I did beat a life threatening illness last year” “I know, I know I do look great considering”. So foolish, I had underestimated cancer, but perhaps still not over estimated myself. I resolved when it comes to cancer, I won’t get fooled again!

Then the music shifted my emotions with the first chorus of “A day in the life” by The Beatles… “I read the news today, oh boy”. It’s always been one of my favorite songs. There’s a quite sadness in the beginning that makes you feel a little lost and helpless about all the things that happen in life. And then just as you’re about to sink into your own self pity the orchestra spirals out of control and drags you into what you must do… “woke up, got outta bed and dragged a comb across my head”. The music comes back around and you realize that this is just the cycle of life; good and bad life just goes on. I resolved that this is just the way it is, crazy or not, and the finality of that thought was solidified with a final boom on the piano keys.

The final song to end my music therapy starts with a ticking countdown that pumped me up into the final stage of my manic epiphany, ahhh the power of Loverboy! While I worked out all the things I’m going to do to beat cancer, I sang at the top of my lungs. It was a real lunatic moment reflected in the eyes of the dude next to me at the stop light… my ear flap ski hat really completed the crazy picture. “I’ve had all I can take, I can’t take it no more, I’m gonna pack my bags and ffffllllllllyyyyy…. my way, or no way at all!” If you scream that part, you still wont sound as good as Loverboy, but you will resolve that from now on this cancer thing is gonna happen, my way… or no way at all!

PET scans... good times, good times...

2009-01-13T17:15:00.001-05:00

I did not know how long it would take to get a CT/PET scan until I arrived for the appointment early in the morning. I’m a “must eat as soon as I roll outta bed” kinda person, and having gotten up at 7am without breakfast or coffee (have to fast for scan) and drove 2 hours (again with out coffee) to be told at 10am that the scan process will take 3 hours (without coffee)… well she’s lucky I didn’t eat my Wheaties after all!

The scan it’s self is only about an hour, but you have to have a die injected beforehand and then percolate for an hour. Ahh injections here we go again! You know the story, my veins are toast and it’s very hard to get a line in or out. After the usual 3 tries in different locations the tech got into my hand, the problem with that was I started to faint after the 2nd try and more people had to be called in to deal with me and my shenanigans while the first guy kept poking around.

It’s really so maddening! I am not afraid of needles or blood and I am indifferent to these pains, but the moment it looks like the process is not working (usually the 2nd,3rd or 4th poke) I start to faint. My nurses, mother and therapist all say it’s a stress response but I don’t feel stressed, just embarrassed that I can’t control myself. (The lack of food probably didn’t help.)

Oh it just flabbergasts me! I am not a lily of girl, I can do 16 rounds of chemo, watch the doctor jab a 6” needle in my heart to drain it… hell I once took a punch in the jaw in grade 9 from a girl built like a quarter back; I was famous that week! (I didn’t dare hit her back, but I didn’t fall down either; and I kept her boyfriend… I digress…) I am a tough bitch… who faints allot! (As soon as I wake up there’ll be hell to pay!)

Anyways the scan was uneventful; the results are in a few days.
Tamara -1 vs. Cancer -0

This year I think Ill grow my own white blood cells!

2009-01-01T23:41:00.002-05:00

I had one last shot of Neupogen tonight to kick start my white blood cells; the rest is up to me now. That’s a total of 50 home injections over the past 8 months, no more dartboard belly! That's a great start to my year!

The root of the problem

2008-12-27T13:38:00.000-05:00

Well my hair didn’t grow back in rich, luxurious or curly; it’s grey – field mouse grey. So I decided it was time to do something about it, but there is no way I’m jumping back on the hair dye wagon. Earlier in my research into what causes lymphoma I constantly came across the suggestions (no proof, research in progress) that pesticides, and chemical hair dyes may be culprits.

Now I haven’t’ been rolling around in a freshly sprayed grub-free lawn, but I don’t eat organic vegetables, (yet) so there’s a possible infiltration source. I do/ did dye my hair religiously every month since I was 14. Seriously, I’m not sure about god, but I know Clairol has always been my savior! Could it be my faith was misguided?

I started looking into alternate hair dyes which lead me to hennas and chemical ingredients to avoid in colourants. Thus far I know I’m looking for something ammonia, resorcinol, paraben, phenylenediamines (PPD) and hydrogen peroxide free; good luck lady! It would take to long for me to outline the concerns with each of these chemicals, just Google them and nasty stuff will come up; I will however get into PPD’s.

This one is great, listed as a potential (means not yet confirmed so go ahead and lather it on until we figure it out) carcinogen (cancer-causing agent) used in hair dyes, rubbers, textiles dyes and pigments. This one seems the worst to me, and yet it is found in every “natural” hair colouring product I have looked up, not to mention the chemical colouring products I used to use like Clairol. What to do?

So I went to the mall to pick up a book I saw awhile back called Gorgeously Green. It outlines concerns with traditional home, beauty, lifestyle and food products, and then gives you alternative products to use. Sounds great, someone has done a bunch of the work for me right? Wrong! First section I opened up to, hair dyes, states “the following dyes contain no harmful chemicals:” So I bought the first brand on the list to try out and right on the packaging it lists PPD’s in the ingredients.

So I don’t know what to do anymore??? I want to be part of this fashionable world that we live in where products can enhance the outside you, but not if they might kill the inside me. To carry on using the same night creams, eye make-up’s, hair dyes etc that I know are filled with chemicals that are bad for me seems as reckless as smoking.

So I’m stuck; grey haired and wiser to the world of what can kill me, but I’m jealous of those who’s bleached highlights, fake nails and glitter scream ‘blissfully ignorant and lookin good!’ I miss my misguided faith.

just eat it.

2008-12-19T20:26:00.001-05:00

I’ve been thinking about cracking open my cancer diet & lifestyle books again. In the beginning I was all gun-ho to get the latest books and overhaul my diet to eat things that directly supported my health and didn’t contribute to the cancer.

Ya that went out the window after reading, it never made it execution! I actually had a very basic low fat diet (with a side of chocolate) before I got sick. I didn’t add salt or sugars to stuff, I eat cereals that tasted like cardboard because they’re healthy, low fat everything and dairy free; I’m a soy girl. But I couldn’t even keep up dietary habits let alone improve upon them once this ride got started for two reasons: I started losing my taste buds, and my parents took over the cooking.

One of the joys of moving out on your own as an adult is that you get to do things your way. You get to try new foods, experiment, create your own method of sustaining yourself. The joy of moving back home when you have cancer is that your family can take care of you, and slowly kill you with their methods of sustaining themselves! This evening I saw my father put a quarter cup of salt in a 2 liter pot of water to boil pasta, a quarter cup over a pinch! When I commented about cholesterol levels he was like “you don’t want to eat it, the peanut butter is in the cupboard!” I’m too tired to make my own meals, I ate the clogged artery spaghetti and man was it good!

I also lost the eat well battle to taste buds. After 3 months I couldn’t taste my low fat soy milk, started drinking high fat vanilla soy in my new sugary cereal; bye bye spelt flakes. All the books I was reading encouraged me to embrace a raw food diet. Yes after a rough day of chemo that’s exactly what the body wants, chunks of cold carrots and broccoli, no no Ill pass on the Tim Horton’s fruit explosion muffin give me roughage!

Low Key Last Chemo

2008-12-17T17:16:00.004-05:00

I just said goodbye to my WeCare nurse; it’s hard to believe that I may never see her again. No matter how bad I felt on any particular day I always looked forward to having her visit weekly while she flushed my picc line. I guess that’s the mark of a good nurse when you see them as someone who comes to visit you not just take care of you.

I had my last scheduled chemo treatment yesterday. It went down without incident but not really as planned. Everyone kept telling me that this should be an occasion for celebration so I tried to put something’s together for my last trip to medical daycare but no one really seemed interested in helping. I guess it’s like your birthday when people say “it’s your birthday, when are you planning your party?” “I don’t know, when you planning my party – I’m the one with the birthday!”

Ya so in-between all the commotion over the week-end I baked 2 dozen cookies, decorated them, shopped for a cookie tin, a card and then tried to put the whole thing together Tuesday morning in-time for chemo. It wasn’t really coming together in-time, I was late to chemo and neither my mother or I brought a camera so I was feeling very frustrated and disgruntled at the fact that if this is supposed to be a celebration for everyone over my accomplishment, that everyone pushed me into celebrating; why am I the one that had to do all the work?

As it turned out none of my usual nurses where there, it wasn’t the usual chemo crowd, there was no pictures, no cookies, no onslaught of well wishes (and no balloons or strippers – a girl can hope!) rather the last chemo visit just passed quietly - done and gone. Sometimes big moments on the inside aren’t that big on the outside, and I'm okay with that.

Just breathe

2008-12-15T23:04:00.002-05:00

So I drove myself to the ER. Don’t you love it when a story starts like that? Because you know the person telling the tale is either someone who lacks perspective on what a real emergency is, or really stupid and lacks perspective on the real nature of their emergency. You be the judge.

So I drove myself to the ER on Saturday after a breathing attack. My ability to catch my breath had been deteriorating for about a few weeks to the point where I could only take shallow breaths and getting down the stairs to get my cereal required multiple stops. So I fixed the problem by barely getting off the couch. Then the breathing attacks started when I did exert myself (like walk to the bathroom), so I pulled out an old puffer I was prescribed BC (before cancer) to help.

Finally I had an attack Saturday afternoon that left me seeing stars and that scared me into going to get it checked out. Of course I waited until my family was out of town and the doctors offices were closed, so I drove myself in the snow storm to the ER.

I was into see a doctor in good time and then a few tests. I did a chest x-ray, and ECG and blood-work that included a D-dimer test. The x-ray was of no help, the ECG showed tachycardia (rapid heart rate) and I tested positive for a possible blood-clot… oh and low blood pressure. The doctor wanted me to have a lung VQ scan which would show us what we needed to know, but the machine wasn’t available on week-ends so he insisted on a CAT scan to look for the clot and I said “no way!”

I have had 3 or 4 CAT scans this year during the diagnosis phase; 2 of them nobody bothered to put the protective skirt over my reproductive parts and I didn’t know any better. Anyways I explained to him that I had applied for the PET scan program for my after chemo scan in January to avoid more CAT scans aka. radiation as I wasn’t keen on unnecessary scans and I would wait until Monday for the lung VQ. He told me I might die in my sleep tonight and I was getting the CAT.

I gave in but my body would not. My destroyed circulatory system refused to provide a vein big enough for the contrast dye injection so I was given a 24h shot of Heparin (blood thinner) and sent on my way with a referral for a lung VQ, junkie looking arms, a smug smile and a new phobia about going to sleep.

I spent most of Sunday in the Thrombosis department getting a lung VQ (open on the week-ends!!!) which was inconclusive. So I was given another 24h shot of Heparin, a referral for a leg ultrasound… because I guess that’s where blood-clots hide and guess what another CAT scan suggestion!

By Monday the ultrasound showed no clots and I was feeling better, so it could have been that the Heparin did the job or this may just be what it’s like at the final stages of chemo? (God how awful!!!) My body just might be so run down and attacked that some of my organs are having a little trouble doing their job. If that’s the case I would think they would function better again as my body repairs and recovers from chemo? I have a Cardiologist apt in a week to assess this.

Moral of the story: Don’t wait till you can’t breathe, don’t drive yourself anywhere when you can’t breathe and don’t hang on every breath of every doctor you encounter… because if they are only looking at one part of you, they are not looking out for all of you.

Birthdays are a pain in the ass – literally!

2008-11-25T20:46:00.001-05:00

Well I’m older now, but not wiser that’s for sure. I started the first day of my 28th year with an enema in the morning and then iced that cake of an idea with a rectal exam in the afternoon. “happy birthday to me, happy birthday to me…” Actually maybe that was smart; the year can only get better from here!

Chemotherapy is very hard on the digestive system which in turn messes with your bowels. I have read about (and experienced) a constant swing back and forth between constipation and diarrhea in patients getting treatment. It all becomes very hard on the backdoor and can lead to a whole mess of other problems like fissures and hemorrhoids. I honestly spend more time dealing with this shit (pun intended!) than the actual cancer; thus the ass exam.

Oh well, putting that “behind me” I have a fun filled week of other doctor appointments to address all of the other side effects that have occurred from the cancer or treatment. Next the eye doctor – I’m going blind and can’t do anything without what used to be my reading only glasses. This could either be nerve damage from the lymphoma or a temporary side effect of the chemo. (I’m also losing memory and going deaf but I’m confident these are temporary and take far too much joy in driving people nutz to address the issue right now.)

Then into see the cardiologist about my fluttery ticker. Again this could be from the chemo, but it’s more likely something to do with the mass that was/is in my chest pushing on my heart for so long. I hope it’s just that as the mass shrinks the pressure is receding causing irregular activity, but I’m worried that there’s a thin spot on the wall of my heart from where the mass was because I have read about it happening with other lymphoma patients; and all my symptoms sound the same. My hematologist just “loves it” when I Google.

But all this gets me thinking about how even when it’s over, it’s not really over. After chemo I may have radiation (or more chemo) and then endless check ups and scans. Overall I am confident that I will eventually be Hodgkin’s free. But what if I’m left with a heart problem, damaged eye sight, a broken ass! What if my eyebrows never grow back, I’m so fucking sick of painting my eyebrows on like a geisha girl everyday. What if the potential radiation to my chest area causes a breast cancer 10 years down the road, as we now know radiation can do? I don’t think I can do this again, and certainly not breast cancer. What if I have children by then, god what if I can’t have children because of this?

It’s not really going to be over. Life AC (after cancer) will be a life of some certain cancer problems and the uncertainty of potential cancer problems. No wonder I feel sick when people talk about this being over soon and getting back to my old life. I don’t know about you, but none of this was in my old life; certainly not the first 27 years.

2008-11-20T21:05:00.003-05:00

I’m afraid for this to end. I have just two more scheduled treatments to do, and you would think it would make it easier to do knowing I’m so close to the end, but it's not. Everyone keeps talking about this ending and me going back to work and back into a normal life and it makes me feel worse - anxious. I've been sick for so long, and feel so run down now it's hard to imagine ever feeling good again. And then going back into my normal life, I don't even know what that is anymore! This whole thing has changed me, I can't quite pin point how but I know I am not myself; I’m going to feel like a stranger in my own day.

Treatments are getting harder physically now in that I feel very nauseous during and after treatment and my body is just not recovering the way it used to. These days I barely have anytime between treatments that I feel good and have a normal amount of energy, my WBC never recovers before the next round now. I’ve upped my Neupogen to 4 shots per cycle, but it’s not really helping and the pain of it is too much for me to do 5 shots. Id rather have low counts and be a slug.

Despite the nausea I have done a fabulous job of eating my way through this experience. I’ve pushed out of most of my jeans and had to buy bigger underwear! Horrifying, I’ve gained weight before but it never pushed me to the next ass size. I keep telling myself Ill deal with the weight after, be happy with the cookies now, but I’m a little afraid I wont have the energy to shape myself up after.

The weight is also tainting my excitement for our upcoming vacation. My family has planned Christmas on a beach to celebrate the end of my treatments and give us all a break from… why we’re going with each other I don’t know? But there is no way I’m getting in a bikini, not that I can get much sun so soon after chemo anyways. So I have this awful picture of myself fat, pale, baldish and in one of those old lady skirted swimsuits knitting in the shade. That’s right I knit!

Going Feral.

2008-11-12T19:10:00.003-05:00

I haven’t got much of a reason to leave the house today, so I’ve been circling it like caged animal. My responsibilities and abilities are so minimal these days there’s not much to do; not much I want to do or much I can do. I thought about getting dressed and going out to the mall but it seems like a lot of effort for nothing, as I’m out of spending cash and what’s the point of painting on my eyebrows when I’m just going to wipe em off again.

This is perhaps how depression starts. Why get out of my pajamas when I’m just going to get back in them having done nothing in-between, might as well stay in them. It’s hard to keep track of day and night when you have no routine beyond the recognition that Oprah signifies that transfer between daytime and evening television at 4pm.

However it is amazing how fast time flies pissing it away, Tuesday was lucky number 13 (out of 16) rounds of chemo finished. I am the last patient booked each Tuesday, so the place is empty when we are done and the nurse ends her shift to go for dinner when I finish. Unfortunately for her I have an uncanny knack of waiting till the end of my rounds to be sick which makes the nurses stay late and Mum terrified that she'll have to drive home with me, head in a bag. Although she much cooler about it since we started driving my car to and from.

So it was a tough time when I got home and crackers for dinner. But it didn't last long; thankfully I got a new prescription to help me sleep... I think it must be anesthesia in pill form because I barely remember taking it and woke up quite refreshed the morning after - organs intact.

ECG...is this thing on?

2008-10-29T13:43:00.005-04:00

I spent 30 minutes scrubbing sticky residue off my chest this morning in a state of frustration and exhaustion. I acquired my portable ECG monitor yesterday for a 24 hour trial after bringing concerns to my doctor about my heart randomly starting to pound over the past 6 weeks. It’s becoming more frequent and intense, but apparently the cure is to wear a heart monitor… because nothing happened the whole time I wore it! It’s just particularly awful because I have bruising and rash between my chest and round my ribs where the jumper cable sticker thingy’s were and a headache from another sleepless (yet calm and rhythmic) night. Eerrr!

Last week I was talking to the therapist I started seeing months ago when the whole cancer thing started and during a conversation about sleep it dawned on me that I have not slept, like truly and deeply slept in almost a year now. By the time I was diagnosed I could barely lie down without suffocating from the mass and fluid that was rising in my lungs (and later heart) not to mention a choking cough, night sweats and itching… I was a zombie for about 4 months before prior to my x-ray. Then broken painful fragments of sleep during my stay in the hospital after surgery, and straight into chemo with all its side effects shortly after. I can honestly say I sleep in fragments never really hitting REM for very long, no wonder my short term memory is getting worse by the… what was I saying?

On a bright note it snowed for the first time yesterday, big time! I should be grumpy about it (like everyone else) but the whole house was piercingly bright this morning with the sun reflected off the snow which is so much better than the last 2 weeks of rain. Plus for me the faster we move from one season to the next, the faster I get through this. Ill be grumpy when I go shovel off my car later, jeeze where’s my portable ECG now!

"pic" & choose, but ya can't have it all.

2008-09-22T22:40:00.007-04:00

My hair is growing back! Three weeks ago I was almost bald. I had a rapidly thinning brush-cut that was quickly starting to look more "chemo patient" and less "GI Jane" by the day. No sooner had I resolved myself to the fact that I was going to have to bic my lid, it started to grow again. Prior to cutting/ shaving off my hair, it was long, straight and red... with a great deal of silver on the sides of my head. Although I had no idea just how much silver was there, (thanks to Clairol) until my head was shaved exposing the roots; the sides of my head looked bald due to the lack of hair pigment!

Anyways the hair growing back is already much darker all over my head, and brown. The nurses advise me it will likely fall out again over the final three months of my treatment, and speculate that this crop of hair is due to the last chemo round(s) not happening to take effect during my heads hair growth cycle. Whatever, I’m enjoying it while I got it! And really looking forward to my new hair after chemo as I hear it could come back another colour and curly… “Oh to be curly! Please god after all this I deserve rich curly locks, devoid of grey!”

Four weeks ago I got a pic line put in my left arm – fant-“ass”-tic! Four weeks later, still not impressed. The merits of a pic line are: They save your veins from over use and damage resulting from over use and chemo. They are also a non-surgical procedure, and easier to get that a portacath. I was too chicken shit to get either a pic or port in the beginning and waited until my veins were collapsing, and the burning up and down my arms (from chemo) kept me up at night… and on a steady dose of pain killers before I conceded to sign up. By then the waiting list was too long for a port so I got a pic line within two weeks of requisite. Lesson for ya: Don’t be an ass, listen to your nurses and get a port or a pic when you start this process to avoid the above.

The downside to the pic line is: it’s a bulky tool kit on your arm for everyone to see. The bandages itch all the time. Local bloodwork clinics can not use pic lines, so you still get a needle unless you go to the hospital. It’s a bitch to get comfortable at night if you’re an “arm under head sleeper” and my favorite… it has to be flushed with saline every week. The later is the worst for me because after 4 months of treatment I can now taste the saline when I get my lines flushed (it has to be flushed after every chemo, blood work and cleaning) and it makes me nauseous. In the beginning I couldn’t taste it, nor would it have affected me if I could, but the body is smart! After awhile it learns that everytime we taste this shit bad things happen and we feel sick, so let’s just cut to the chase and feel sick anyways. Patterned responses, hard to control, hard to overcome. So in the end, every chance I get to not use the line, I opt for a needle (collapsed veins = 2-3 try’s) just to avoid a flush… why do I have this pic line again?

Let's Wig Out!

2008-09-05T21:34:00.004-04:00

Well I made it this far; I'm halfway through my treatment with great progress, and I feel like celebrating!

These days I'm getting pretty sick being bald and am dying to get out there with some fun new hair, but I don't want to do it alone. (I'm sure you can all relate, because being bald is just like having a bad hair day... except it doesn't go away the next day - imagine everyday all day... ahhh!)

So Id like to propose we pull out our party wigs and go out for cocktails to celebrate... trust me you don't want to dance in a wig - too hot!

Being the types of girls you are... I know you crazy bitches so well... most of you already have wigs in your tickle trunks. For those of you that don't, well it was just a matter of time before someone like you (wild & crazy) ended up with one! lol

Let's get together Friday August 5th at 8pm at The Collection in the Byward Market. I hope you can all make it, I really need a girls night out and miss your company. Please reply asap below and remember to come incognito!

Sobbing with Joy!

2008-09-04T21:13:00.002-04:00

A tear started rolling down my cheeks as I walked out of the hospital this afternoon, and by the time I hit the hwy I was sobbing with joy. I had a check up with my hematologist to see how I had progressed halfway through my treatments, and the news was great. After four months of chemo, the mass in my chest is almost gone.

At first I found it odd to be sobbing over the news, since I barely cried when I found out I had cancer. I mean I cried a little (or allot at specific periods) but it was more about upsetting my family, never the cancer. I always accepted the cancer like a moment I knew was coming had finally arrived.

Why does it mean so much to me to know that it’s almost gone? I think I figured it out… I didn’t know I had so much to be afraid of when I began treatments. Ignorance is bliss, and that bliss got me through about the first three months of treatments. Knowledge, experience and fear has started to wear me down over the last month.

Thank god there is nothing to compare just how horrible chemotherapy can make you feel. If I had known… I can’t even finish this sentence; I have no answer for it. I don’t know what would have happened if I had even just a taste of how four months into the future might feel. It’s that knowledge of how awful it does feel that had shaken my resolve over the past month when anticipating future treatments.

Everyone was really enthusiastic about me reaching my halfway point in treatment, but I couldn’t get into it the same way this news has affected me. To them the worst was almost done; to me the worst was still coming. Chemo doesn’t get any easier; it’s cumulative and gets worse everytime! I hate to articulate that to anyone who’s just started. I feel like I’ve told you a bully’s about to kick your ass around the next corner, rather than let you take at least the first half the surprise beating in shock.

Anyways this news has given me back something that I didn’t realize was missing until it popped back in my head tonight, “you can do this, you’re strong”. I run an inner monolog constantly, I mean constantly! (I keep myself up at night because I wont shut up.) I tell myself that I am a strong person all the time! It is a constant phrase in my mind during tough times, because… well cancer isn’t the first pile a shit I’ve dug through. And I just realized it hasn’t been in my inner monolog for the past few weeks, I was really starting to succumb mentally to the physical beating of chemo.

Well I still have to do four more months of treatments, but I start my second half with the same resolve to stay strong that I had when I began my treatments. Now that’s something to sob with joy over!

Chemo Carnival

2008-08-21T17:57:00.006-04:00

Step right up, step right up!
16 shots of chemo, for the cost of your existing life! Knock down all the cancer cells, win yourself... well the rest of your life. That's right folks, 16 shots of chemo and you too can live to see another day. 9.8 outta 10 win everytime! You look like a sharp shootin little lady, here's your gun sweetheart, good luck!

seventh-inning stretch

2008-08-14T22:42:00.003-04:00

I had a little sob on the front porch this evening with my mother. I feel like I am nearing the end of my emotional & physical strength; like I’m going to run out of chemo-steam before the chemo-train is done takin me for a ride. I’m not there yet, but I feel it coming. It’s like every fiber of my being is screaming at me “what are you doing… you remember how awful it was 2 weeks ago, don’t go back… listen Tam, I really think this chemo thing is designed to kill us… you’re crazy to keep letting them do this to you!”

Every other week as I near chemo day my fight or flight response starts to whisper “you can’t win this one, just sit this one out, remember how it knocked us out last time; please don’t do it to us again”. That Tuesday morning I have a self preservation siren that is screaming code red in my head telling me to abort the mission as I drive to the hospital. How long can someone ignore themselves in the best interests of themselves?

Paragraph one “you’re crazy to keep letting them do this to you!” After puke treatment 5 I decided I needed to disengage myself during chemo visits in order not to become overwhelmed by the process of putting in the needle, receiving the drugs and really just acknowledging that I was there and that was happening, because sights and sounds of the hospital were making me physically sick. Did Pavlov’s dog barf at the sound of the saline drip? Somehow I’ve trained myself to; so I disengage, pretend I’m not there and block out what’s going on around me. The problem I’m now having with that is a feeling like this is being done to me, and it perpetuates the reality that I am not in control of this, and I can’t stop it. (Cancer or treatment)

In the beginning I felt in control, I was a willing participant; I’m no longer willing and as much as I hate the word, I feel like I’m being molested every 2 weeks. Every 2 weeks I don’t want to drive there, I don’t want the needles, I don’t want the drugs, I don’t want to sit there for 3 hours while it burns up my arms. So I close my eyes and try to will myself to sleep or pretend I’m asleep and that I don’t feel the chemo or hear other peoples cancer conversations, and I walk out feeling (well sick and disoriented) but also wronged… like it was wrong of them to that to me because I’m not willing.

So I’m emotionally stuck. In the beginning I felt like had a choice, and the choice was to embrace the treatment in a calm rational manner. I mentally can control my outlook and chose to make the experiences positive. Except now I’m like a dog that’s been kicked to many times for wagging it’s tail and my body is taking over and declaring my mind unfit, because it’s evident to my body that we (I) need to be in panic mode and stop wagging my tail at it. “I’m being attacked, panic, panic”. Yet if I choose to shut it all out and endure, my self preservation siren still goes off screaming “how can you let them do this to you emotionally, and by the way it is still happening physically!”

Mind and body don’t want to do it regardless of whether I embrace it, acknowledge it or ignore it and pretend… there’s no foolin me. If only I was schizophrenic, then only one of me would have to go through this. The rest of me could just carry on “la de da”, although it would be hard to explain the hair loss to the other me’s.

Outer beauty's not home right now, it's just me and MacGyver...

2008-07-22T13:08:00.003-04:00

My eyebrows and eyelashes are thinning now along with what’s left of my hair. I hate what I look like in the morning. Some nights I go to bed sad that I’m alone in this, but I always wake up thankful that no man has to see this. But then my thought circles round again; if I were loved they would find me beautiful anyways and I would have someone to go to bed with. Hummm…

I do think inner beauty goes a long way, and that I do poses enough of it in the absence of my outer attributes to get me by. It just takes as much effort to invoke it on a daily basis as it does to paint on outer beauty. I’ve never had to call on it so much before; my inner beauty was a bonus, an “on top” of my outer beauty. I’m habitually described as “tall, gorgeous “and secondly,” funny or cool” by them to their buddies. Now I don’t know what they say, and that makes me nervous. I’ve always had a clear idea of my sexual appeal, and am learning how much I valued and needed it as part of my identity when dealing with… well everyone, not just men. Outer beauty was a tool I used to lure them in. People don’t see inner beauty in brief encounters, they see bald chick.

In someone’s day of dealing with the public, at the end of the day they can usually only recall 2 or 3 people that stand out in there mind; the rest are a blur of nobodies. I’m sure I was always one of those 2 or 3 and took pride in standing out in someone’s mind. Id hate to be part of the blur, the nobodies, to not register on their radar or worse yet register as something odd in their day.

More acceptance, patience and confidence is required for this note. Ha, acceptance… I was cleaning out the bathroom this morning and I can’t get rid of my hair elastics or clips! I’ve got a brush cut now, but who knows when those might come in handy? Maybe a friend will stop by with a hair emergency or Ill get trapped in the bathroom in a life or death situation and have to MacGyver myself out with a barrette and scrunchy. Yes, these are all very good reason to hang these things…. If I cannot master acceptance, patience and confidence today, then I will work on my ingenuity and MacGyver skills.

Observations on Losing Hair

2008-07-05T16:43:00.001-04:00

Here's a few observations being 4 weeks into it you won’t read in any book:

- When it starts to go, it goes fast! I couldn't cut it all off without proof that it was going to fall out. The nurses warned me that it would go quickly, and it may be traumatic if I didn't bite the bullet and cut it before then - I didn't listen. It fell out for about 2 weeks before I cut it; that was about 1 week too long! If you are a "freaker outer" cut it on the 4th or 5th day your follicles start jumping ship. You'll have enough proof that they're mutinying without having to watch the ship sink.

- Don't shave your head completely. Get a hair dresser to cut it into some kind of pixie cut first keeping length on top or around your face because you may not go bald for awhile or at all. Short cuts can do thinning hair, I've rocked it for about 3 weeks and just went shorter last week... and now it seems to have stopped falling out. yay!

- Nothing screams cancer patient like a scarf or turban on a young chick; just live your truth or wig out.

- Wear bigger earrings and more eye make-up, you wont look over done. I've had to kick it up a notch and sport my evening looks during the day. In photo's coming back to me I found I looked really pale and naked with such little hair to draw attention to my face. I started using my former hair-styling time in the morning to Tammy-Faye the eyes and I look alive again.

- My armpit hair has stopped growing - yay:) Don't ask about the bikini... why god!?

- You may look like a stereotypical lesbian, a really cute lesbian, but one none the less. Here I was all worried no one would hit on me at the bars anymore:) If you're not gay, thank the ladies and what the heck, let them buy you a drink! Years from now you and your loved ones can fondly refer back this time as that year you were "experimenting" (with the hair lol), rather than that time you had Hodgkin's!

Canada Day - Pity Party - BYOP (Peanutbutter)

2008-07-01T21:24:00.001-04:00

I seem to be writing this a lot lately:
“I just realized I didn’t send you a note back when you wrote me last week… duh! I am having a really rough time with the memory these days; I hear “they” call it chemo brain. Passing thoughts get filled into the “done & sent” pile before I get a chance to do them. (I think I’m getting way more done than I actually am – good for the ego, bad for production. Lol)”

Just came back from chemo, feel yucky this time. Most times I tolerate the drugs going in well and then in 48 hours I start to feel queasy, this time that feeling started the moment I was hooked up. Bourns! I’m not really a “I’m gonna puke kinda girl” (Id like to think its years of Jägermeister shots at the bar that have conditioned my stomach for chemo… I knew all that drinking would come in handy!) so when I say I’m nauseous , I mean it’s an overall off feeling that makes me feel icky and sometimes have a bad taste in my mouth. You know that feeling “after” a night of drinking and puking - minus the drinking and puking – that’s what I get. Although I really do think they should serve me a real cocktail with my chemo cocktail just to make it all better!

Had to pass up Canada Day plans, which are too bad as I think this is the first C-Day that it hasn’t rained in 5 years. I would have liked to be downtown today to see the buskers and fireworks on Parliament Hill tonight. So I’m trying to catch up on my notes listening to Jamiroquai on the itunes. (I can’t believe it’s been over 10 years since this album, Travelling Without Moving – 1996, came out!) (I can’t believe I’m not 16 anymore!!!) That’s it I’m hitting the 90’s dance mix next!

I’m feeling much better than I was last night mood wise. I was just furious at my mother last night when I learned from a friend that she has continued to send out “tam updates” to my friends and family. I knew that two months ago when I was in the hospital she was keeping everybody up to date, but I thought that had stopped once I got out. The when I went to send out photos and an update from my Martini’s for Hodgkin’s event I learned that she had beat me to it. Way to steal my thunder!

I have so few things in life right now that keep me busy and in communication with my world, that I feel like she was taking that outlet away from me because she needed something to keep her busy. We talked about it after the party and she seemed to understand about not sending out my big news but I guess had continued on with bi-weekly updates. Fast forward one month and I’m sitting here wondering why my friends and family out of town haven’t contacted me in months to see how I’m doing? I only learned about it last night when I sent out an update to a friend and she replied that she knew all about my current med’s and status thanks to Mum’s updates, and what else was new? Well shit – nothing! My new job day in and day out is taking care of me; some days it’s all I have to talk about.

It’s hard moving back home when it’s not on your terms, my cancer is very unreasonable. I’ve had to take a leave of absence from work, stop consulting independently too, have giant needles stabbed into my chest (biopsies) and back (bone marrow), have an oh-so unpleasant heart and lung draining, no one ever gives me anesthesia!, pack up my whole life into a storage unit and move me and my shoes back home (shoes – couldn’t afford a big enough storage unit. Lol) I’m back into my old bedroom recreated next door to my “very different from me sister” who answers most “questuccusations” with “whatever Tam” and the whole family eats different peanut butter than I do… grumble.

It’s hard to want/ accept help from people who eat gross peanut butter (ha!), even when you need it. It’s like sending someone to the store for PB and they come back with chunky… even there best efforts piss you off sometimes. Or maybe the chunky/ smooth debate is old news that went away when you moved out on your own, but now you’re back and their chunky peanut butter is hard to swallow some days.

the healing touch?

2008-06-25T00:10:00.003-04:00

I went to see a man who does healing touch with a girlfriend tonight. I am sure he received a great deal of healing from the parts he was touching, me… not so much. Just as I suspected, someone who prays on the weak as regulars, but mostly makes a living off one shot curious George’s like me.

We drove out to a house in Gatineau and walked right in and sat in the living room until we were seen. I went first into a room and lay on the table and the man (I can’t even remember his name?) just started putting his hands on my stomach, under my breasts and near my pelvis and meditated. (so much for buying me dinner first!)

He did this for about 4 minutes without word and then left the room, for an hour. For an hour!!! For the first 10 minutes I lay there and gazed out the window. The next 10 minutes I started to get irritated, and the next 10 minutes I wondered if I should be meditating, then the next 10 minutes I listened to him go to the bathroom and head to the basement to start up the washing machine. For the next 10 minutes I was irritated again, and then the last 10 minutes I just started text messaging people… did I not get it?

When he finally came back he was surprised that I had not fallen asleep. I resisted the urge to let him know I do that in my own home… for free, but I tried to keep an open mind: ) He then placed his hands in the same locations and told me there was a great deal of tension in my left breast… not my “chest” my “breast” and it was channeling down to the right side of my pelvis. (I guess he missed the giant cancerous sweet potato size mass (6"x6"x2") lying behind my right breast? Although I get why he's drawn... I've always thought the left one was cuter - perkier:) It was important that I realign it through the center of the body because the charkas run from my pelvis to breasts. (I seem to recall them running to my head, but okay?)

He then described to me that there was a charka in my labia, that’s the part between the vagina and anus that needs to be grounded. He actually used the words “labia”, “vagina”, “anus”, “breasts” and “nipple” (I haven’t told you that part yet) in the combined total of 9 minutes he was with me. Our session ended with him telling me to put my left hand on my left breast, making sure the nipple was in my palm, and my right hand on my pelvis for 10 minutes a day to realign and redirect my energy.

Where I come from we call that masturbation. It doesn’t happen every day, it does realign a few things, I didn’t need to pay you $30 bucks to tell me that… and I can do it in 4 minutes!

Coping with Cancer for $13 dollars please.

2008-06-12T19:55:00.004-04:00

Today I went to my first cancer class, Coping with Cancer through the Cancer Clinic at the General; 2 hours and my parking ticket was $13 bucks! Thank god I consumed 9 timbits during the course, almost got my moneys worth. Three other people showed up to watch a power point presentation, “so you’ve got cancer” followed with a meditation video; original, innovative – thanks, do you validate parking?

I don’t know if I am going to like going to generalized cancer groups because it seems to me that other cancers are yucky! One lady had thyroid cancer and was looking bald, pasty and toothless. (well she may have been toothless before, but jeez cancers done nothing for her!) The other woman had throat cancer, was bi-polar and was itching for a smoke break. I learned something about myself sitting next to her; I’m not real receptive to people who a) gave themselves cancer and b) are continuing to give them selves cancer while sucking up services we all paid into. She was nice enough for the first half of the course, but then I think the voices in her head told her to quiet down for the rest of it.

During the meditation video when I was meditating, I made a shopping list for Friday and convinced myself that I really needed a massage. I drove back to the west-end was able to get a walk-in relaxation massage with hot stones at “The Spa”; nice! I started a yoga class yesterday that did help my sciatic nerve, but messed up my shoulder. The girl was rubbing my neck with oil and went a little over my hair line and stepped back with a “oh” and I had to explain to her that her furry fingers were a result of my hair falling out from chemo, and it was best to avoid my lid with sticky fingers. I’m on hair preserve.

The cat and I attempted a nap this afternoon, but the phone wouldn’t quit. The irritation on his little furry face is priceless, especially when he rounds on me like it’s my fault! So I had a 15min cat nap and then was off to learn how to give myself a needle. The nurse said I needed to pick a fat spot to poke, I offered up the booty but she said my belly was just fine – ouch! (note to self, lay off the baby cookies… I just said that with a mouth full of baby cookie!)

The needle was for Neupogen; (sounds like the name of some Asian dude) it’s a drug that will help me grow white blood cells faster. Apparently people with other types of cancer receiving chemo usually have their treatments about 3 weeks apart which gives their bone marrow enough time to grow enough white blood cells back before they knock them out with chemo again. When you have Hodgkin’s its common to have difficulty growing enough white cells back in time for the next round because they are 2 weeks apart. So 1 week after each chemo session I will have to inject myself daily for 5 days with Neupogen to get those cells a’multiplyin… like little white rabbits.

I teared up a little after I gave myself the shot in the nurse’s office (well after I got the balls to do it after three psyches.) Not because it hurt at all, it was because it was another little “real” moment. This is real, it’s really happening; people who are healthy don’t inject needles into their belly.

Thanks for coming out to Martini's for Hodgkin's

2008-06-09T16:55:00.000-04:00

My thank you letter to all who came out to support & donate:

Oh what a night… I’ve left the bar many times without the things I came with, hats, shoes, boyfriends; but never my hair!

Big thanks to everyone that came out Thursday for Martini’s for Hodgkin’s at Bar 56. The evening was a huge success in raising funds for The Lymphoma Foundation of Canada in support of Hodgkin’s Lymphoma research.

My thanks to all my friends that donated gift baskets & gift certificates through their corporations in support of the event, I knew I could count on you guys to help! Congratulations to all those that won gift baskets and gift certificates. (Robyn I’m especially excited for you and your SAAB gift certificate, as a new mom you deserve it!)

I had a blast! It was a little hard for me to stop and chat with all of you for as long as I would have liked to, but just note I was so pleased that each and every one of you came out to support me and my event. And boy did I need it; it was tough parting with all that red hair… which has provided me with a fabulous opportunity to see all the silver roots that are underneath. Errr!

Actually it wasn’t as hard as I thought it would be to cut off all my hair because I had all my friends cheering me on, and I was able to donate that ponytail to Locks of Love, and organization that makes wigs for kids going through the same deal.

One of the things I forgot to mention in my impromptu address to the crowd was why it was so important for me to host this event. Empathy. During my process of being diagnosed with Hodgkin’s leading up to treatment I have had to undergo some difficult procedures and surgeries, and each time the doctors would say to me “don’t worry you’re so lucky, you’re young, strong and healthy; you can endure this.” And I would/ am enduring, but I think about how horrible it would be for a 5 year old or a 75 year old to endure say something like my bone marrow collection (drill into the hip bone) and am just overwhelmed with empathy for others who may not be as young, strong, or healthy as I am, yet have to endure none the less; and so I needed to do something.

So together we were able to raise funds to help others endure Lymphoma and all its pleasantries, but if they’re really lucky they have great friends like I do who support them and that’s the most important help anyone can get.

Thanks again for coming out to show your support.
Tam

I want my Ms. Bigglesworth!

2008-06-09T16:19:00.002-04:00

It seems perfectly reasonable to me that if you are losing your hair to chemo, than you should be blessed with hair loss all over. The gods should give you a break from bikini waxes and say “one hairless cat coming right up; this ones on us!” They did not, I’m still on kitty maintenance and I am one sour puss!

Second Chemo, hair is really falling out!

2008-06-04T17:23:00.010-04:00

Martini’s for Hodgkin’s Invitation

2008-05-29T21:01:00.002-04:00

“Let’s have a drink, support Lymphoma research, and what the heck… let’s cut my hair off too!"

My ongoing experience with Hodgkin’s Lymphoma has put me in a position where I feel I need to give back and help others with similar experiences, with my usual flair, and a martini of course!

On Thursday June 12th at 7:00pm, Id like to personally invite you and everyone on your friends list to join me for “Martini’s for Hodgkin’s” at The Collection downtown for an evening of fundraising evening in support of Hodgkin’s Lymphoma research with a bonus donation to Locks of Love.

This entertaining evening will consist of drinks, dancing, games and prizes leading up to the highlight of the evening; chopping of my hair! That’s right, the hair is coming off, one-way or another! I have a short period of time before my hair really starts to fall out (from chemotherapy) which presents me with the opportunity to cut 16” of red hair off and donate it to Locks of Love, an organization that provides hairpieces to financially disadvantaged children.

Hodgkin’s Lymphoma is cancer that affects the Lymphatic system. It’s a disease that can sneak up on you with very few symptoms, meaning the treatment if often harder to deal with than the disease. Many Lymphoma patients undergo painful procedures like biopsies and bone marrow collection to diagnose the disease, and than undergo months of aggressive chemotherapy (and often radiation) treatment in which they deal with losing all their hair, constant sickness or infections, stem cell transplants, and possible long term affects like infertility. And that’s just the treatment!

The key to making this event work is that you actually come out, and you encourage your friends to come too. It’s not about how much you donate; it’s about supporting the cause, and well… me! I’m more afraid of losing my hair than battling cancer, (female priorities!) but I’m doing my best to go through this process with dignity and my signature “fuck it attitude” that only my friends and family’s encouragement can feed.

There have been so many times where a cause or illness has come close to my heart through a friend and I’ve felt powerless to help; I wish there had been an event like this! Taking the time to come out, show your support, and donate to Lymphoma research will not only direct funds towards better treatments and support programs, it will also make you feel great for really and truly helping.

Remember to bring some cash, your friends, your dancing shoes, your camera (how often do I cut off all my hair!) and a designated driver… as I fully expect you to have “a little too much fun”!!! Please make sure you rsvp the event as soon as you receive this, and forward this invitation.

Looking forward to having a couple of martinis with you and my buddy Hodgkin’s!

http://www.lymphoma.ca/
http://www.locksoflove.org/,
http://www.ottawaentertainment.ca/nightclubs/collectionbar56.asp

Neutropenia saved the day! No chemo today!

2008-05-27T17:38:00.002-04:00

Heavy Lashes

2008-05-26T13:46:00.003-04:00

My hair started to fall out today, so I put on more mascara. Well I sprouted a few tears first and then decided I wasn’t going to waste anymore precious hair time hiding in-doors. I need to get out there and work the lid I’ve still got while I’ve got it.

I curled my tarantula lashes and headed out the door committed to not cry about this today, mostly because there would be a mudslide of mascara down my face.

Some clients don't care if you're in the hospital... and your family can still find you!

2008-05-09T17:33:00.006-04:00

Stool Watching

2008-05-02T20:43:00.000-04:00

I’m doing a lot of peeking between my legs to see what’s goin on the toilet bowl these days… ugh! I guess last week when I was in the hospital and the doctor on call was asking me the usual admittance questions (or what I call the – think I would’a mentioned it questions) like are you coughing up blood, can you feel your extremities, any anal leakage etc… she was very specific on one question. She asked if my stool was black, I said “no” but in truth I hadn’t looked; and she replied “oh that’s good, but if it goes black you let somebody know” very sincerely.

So I’ve been on a black stool watch. I don’t really know why, or what the significance of black poop might mean, but hell if it was important to her, it’s important to me.

The problem is, I’m a decorator… who specializes in colour theory; and I think I may be over analyzing my poop. She didn’t say what shade of black. Anyone who knows anything about colour knows that black has many different undertones, and that colour is affected by light perception. What if the poop is black, but the soft lighting in my bathroom casts it as more of a brown? You can see my dilemma… thank god my schedule affords me time to ponder this.

For now I will stick with nope, and take oh so much pride in the fact that I’ve found an exercise that really challenges my skills as a colour consultant even in my absence from work. Op… gotta go…

Big News:

2008-04-30T20:57:00.001-04:00

Hey Folks,

Thought I’d send out a big note with some news to my friends. Some of you are closer than others, so please don’t be offended by the mass email, rather all of you should interpret it as a “I care enough to make a point to tell you” and I’m just too tired to try and contact you all individually.

I’ve quietly been having some health problems for awhile that finally lead to a diagnosis this month of Lymphoma. For those of you that don’t know what that is; Lymphoma is a cancer of the Lymphatic system. There are many types of Lymphoma; mine is called Hodgkin’s.

I thought it important to tell you guys because there are going to be lots of changes that will elicit questions. For example: I’m moving from my home in Bells Corners back to my parents in Kanata; so they can take care of me during my treatment… so change of address. Treatment: gotta have chemotherapy and maybe radiation which means I may look different if the red hair goes… and god willing that extra 25 pounds! I’ve also taken a sick leave from Norwalk, and will not be accepting independent client work for awhile.

Somethings are going to stay the same… like my phone number/ email and my ability to reply to them. I will also continue to be a sarcastic pervert, perhaps even more now that I have to compensate for my “temporary” inability to be a drunken slut (no booze allowed)… but I’m not packing away the tit shirts just yet.

What you should do & not do:
You can ask me anything… I too want to know if my pubic hair will also fall out during chemo. lol But I don’t need to hear your “Uncle Larry beat cancer stories”. No ones gonna die here so I don’t need to be compared to Uncle Larry’s colon cancer. Although I completely respect that practically everyone has had contact with cancer in their lives (sad but true these days) and that leaves different impressions on us… just don’t push your impressions on me. I’m quite positive and focused on my recovery.

Hummm… what else? Feeling a little better these days, but still in the hospital for the moment. I know a lot of you are thinking when was she sick? The Lymphoma has been growing for a longtime, we think almost 2 years, but I really only started to feel ill about 6 weeks ago. It spiraled down hill quickly from there to the point where I can’t hide the symptoms from others and have had to stay in the hospital due to complications.

I start treatment this week my understanding is that I will get 3 hours of chemo twice a month for 8 months. Doesn’t sound so bad; think Ill spend the 2 weeks in-between those days sun tanning!

I’m sure I’ll have periods where I feel fine, and others where I feel like shit. I’m hoping that you’ll keep me in the loop for events and such and let me pick and chose when I can come out rather than assume I’m laid up dying at home.

Okay, so that’s the big life changing news from me. There are many of you on this email list that I have not been able to keep up with and celebrate your new (happy) events and for that I am very sorry; but I have been thinking about you.

Your welcome to respond, but I suspect many of you will have that “oh shit what do I say moment”. Don’t do it to yourself, just keep in touch as you usually do, or view this as an opportunity for us to get together more now that I’m not working.

Talk to you soon,
Tamara

I’m trapped in my home with a dirty video.

2008-04-30T15:40:00.003-04:00

There are some things you don’t think about when you accept help in personal areas of your life, like the porn in your closet. It’s been there for years, I mean it’s VHS… who owns a video box thingy anymore? (I can’t even think of the name of it, it’s been so long.)

I was done with it a long time ago, how many times can you watch the same people over and over before you start wishing they’d get some new moves. Perhaps old porn is like tired marriage; you are so done with it but can’t find a way to end the relationship (get rid of it) discreetly so you hang on longer than you should.

So here I am 20 minutes away from my mother and her best-friend coming over to help pack up my bedroom to move, running around the house with a black plastic bag of shame. (Thank god I’m not Catholic, Id be a wreck by now bumping around the house thinking my sight is going.)

I can’t think of a good place to stash it. I can’t put it in the garbage, if it was that easy I would have done it long ago; what if a roommate finds it? Can’t keep it in the room were working on, nor the bathroom what if they run out of tp, reach under the counter and surprise! The fridge and the freezer are out… I don’t know, yes I seriously but momentarily thought those would be good hiding spots?

Panic, panic, it wasn’t even that good of a movie, panic, panic…. I know, hide it with the pot. At least if it gets found I’ll be more than a mere pervert, I’ll be a sex-addicted junkie. No such thing as a petty crime for me!

Biospy Blues!

2008-04-29T20:01:00.000-04:00

They poked up my arms... bom bom bom bom, they looked at my pee... bom bom bom bom, they stabbed my chest...bom bom bom bom, then frowned at my ekg... oh and it's hard, oh yes it's hard.... to get someone to treat you... that's right it's hard, oh yes it's hard... I gotz the Biopsy Blues!

My Hodgkin's Symptoms

2008-04-04T21:53:00.000-04:00

Symptoms starting 2 years prior:
-overnight digestive problems resulting in complete rejection of dairy products – unresolved
-deep maddening itch in lower legs under the surface of the skin – continued until mid-treatment

Symptoms starting 1 year prior:
-shooting pain down my left arm & tingling in my hand – got worse
-odd sound in my chest when I lay on my back, like a hollow rattle only I could hear
-fatigue – started skipping work outs, dropped out of jujitsu, thought I was lazy

Symptoms starting 6 months prior:
-pain spread from my left arm to the left side of my upper back
-always out of breath, couldn’t walk a flight of stairs without huffing & puffing
-started coming home after working and napping
-nose started running all the time, a steady drip
-daily headaches
-dizzy hot spells during the day
-trouble breathing when I slept on my left side

Symptoms starting 3 months prior: above symptoms worsened
-pain was so bad in my upper back some nights Id slip into the kitchen and throw back a few shots of Rum for instant relief & sit up crying for hours – was taking Naproxen daily
-could no longer sleep on my back or left side – only on my right side with my left arm propped up hugging several pillows, thus keeping my chest cavity as open as possible for air
-night sweats started

Symptoms starting 6 weeks prior: above symptoms worsened to walking Zombie stage
-dry cough started, later became a wet cough as Pleural & Pericardial effusion (fluid around the heart & lungs) began to rise
- daily episodes of heart racing & sweats

After 6 weeks of coughing I went to the doctor who ordered a chest x-ray, we found the mass & my health deteriorated quickly from there

Notes:
Where was my doctor in all this?
Throughout the 2 years leading up to a diagnosis I would visit my doctor every few months or as new symptoms presented. He was often reluctant to pursue problems or gave simple “live with it” explanations for troubles. I did push every now and then for further investigation and got referrals to specialists that often resulted in dead ends, which I would accept. Even as the pain progressed I was often pacified with an “it’s nothing” response despite my physical discomfort. (My mother gave me her Naproxen for her Bursitis because the Dr. wouldn’t prescribe anything)
A few months prior to my x-ray the Dr. was frustrated with my increased visits about the same problems and told me the pain was likely in my head and perhaps I had a personality disorder. I was so mad and didn’t know what to do anymore, that’s why I waited until my cough was so bad before I went back to him; and even then he was reluctant to order an x-ray.