Gotz ta book my ticket soon!!!

Gala3

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

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

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

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:

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.

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

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

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!

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"

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

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!

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!

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

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

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

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?

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

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

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: