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!