Friday, January 29, 2010

The real deal...

I have had many many comments from friends and family about how impressed you all are on how well I am handling my breast cancer diagnosis and treatment. My attitude stems from a combination of a natural disposition toward simply tackling the problem and moving on plus a concentrated effort to remain positive since that is the advice I get from everyone - not just well-wishers, but the actual medical professionals as well.

So when I read about a cancer patient who, once finished with her chemo (the jewel-red kind which I also had), went home and threw out EVERYTHING red that she owned as she did not want to be reminded of the chemo colour ever again, I was amazed. I view chemo the opposite way. I tell myself (and others) that CHEMO IS MY FRIEND. Some days it is easier to believe this than other days, but there is all kinds of research and history that shows how much chemo improves a cancer patient's chance of survival. If I have been diagnosed with cancer, why wouldn't I want the best medicine to help me beat that? Even though the temporary side effects are sometimes unpleasant, I am willing to deal with a LOT of unpleasantness to give myself the best chance of survival.

I WANT TO SURVIVE CANCER. And I plan to. Of course, just because you plan something doesn't necessarily means it happens - but I am putting my damndest best effort toward it which means being THANKFUL that I can have chemo and maintaining a positive attitude - even when it's hard.

So you often hear of me looking at the bright side and making the lemons out of the lemonade. And less frequently you hear about the 'down days' which is also part of my effort to remain positive. But I think it's time to let you guys in on it.

As can be expected, I have had down days. But surprisingly few of them looking at the big picture. Of course, the day I was diagnosed was a hard one - but I had people who love me surrounding me and supporting me that made it bearable. The following morning, I woke up, found Cam at his computer, went up and hugged him from the back and simply cried quietly. Not sobbing or weeping - just some shortlived tears for a few moments before I pulled myself together.

Then, when I went for my MRI at the hospital, I elected to go alone thinking it would be one more of those simple quick tests that seemed silly to drag someone along for. Once I got there, they told me I had to have an injection for the MRI. At the beginning of this process, I had an I.V. needle phobia (which is long gone now, btw). This fear of the needle unleashed my pent-up emotions and I lay on the gurney crying and crying with no one there (because of my own dumb choice) except a very kind nurse who held my hand and soothingly told me she understood how overwhelming it all was.

Not so much anymore, but earlier when I was still getting used to my diagnosis, I followed the advice of other cancer patients and medical professionals by NOT surfing the web regarding cancer because there is so much misinformation out there and it can be very scary. So I thought I was following a 'safe' branch of inquiry in just trying to get a handle on just how long people would typically be away from their jobs while trying to fight this battle. It was dumb of me to think I could Google that question and not get a list of horror stories about surgeries gone wrong and horrifying chemo effects. Without realizing where I'd gone, I started reading about people who said that their chemo treatments 'felt like they were run over by a truck'. That was one of the tamer ones, I think but I was reading along this blog and all of a sudden I broke down sobbing - much to Cam's shock & surprise - as he of course had no idea what I was reading online or he might have stopped me from doing it. And so the advice was correct to not read that crap because what I read about what was happening to other people was WAY scarier than what chemo has actually turned out to be for me. Of course, perhaps if I hadn't read that stuff, I would be suffering more - that whole thing about expectations...? I don't know. But anyway, this blog is about the meltdowns and that was one I had.

Then, another day in the fall, when my inlaws on their way out the door from a visit, I had a minor meltdown while watching them gather their stuff to leave. This was one of those times where I have NO idea why this happened - just simply out of the blue, I was sitting on the stairs and started to cry.

Other than kinda feeling 'blah' after chemo days, I hadn't really had many more meltdowns until last week when I STUPIDLY watched Terms of Endearment in the morning, which set me bawling my head off the WHOLE DAY. That was probably the worst one yet... but I managed to pull myself together for TOPS and ended up having a really enjoyable evening with my friends afterward so the day wasn't a total write-off.

As you guys know, for chemo #4, my neutrophils were low and I got a 75% dose of chemo. That is mildly concerning when you're thinking that 100% of the dose will do a better job of battling any cancer cells. Of course, that's not how the game works but I was happy to have 75% rather than no chemo... SO, I was REALLY hoping that my neutrophils would bounce back for Round 5 and I was feeling a lot more energetic than I had been in previous rounds so I had CONVINCED myself that I was going to be in top shape for a full dose of chemo on Round 5. And so you ALSO know that didn't happen for me. The result? Another meltdown. Since it involved another blood test, and more reduced chemo.... but most importantly, the feeling of betrayal. My body has already betrayed me once because cancer is your own cells simply dividing faster. WHY? No one really knows yet. So, I dealt with that betrayal and had those enthusiastic cells cut out, and so now I want to get the treatment done & fly through it and move along with life. But then, another body betrayal.... low neutrophils #1.... but HEY - I was ok with that... but then yet ANOTHER body betrayal - low damned neutrophils #2.... I think I'm pretty darn good to my body. It's not obese, I don't let it smoke, I am a light drinker, I eat vegetables and fruit and protein and vitamins. WHY IS MY BODY CONTINUING TO LET ME DOWN??? Yes - this bums me out - especially because there is nothing that can be done about neutrophils. So it IS tough to sit in the lab waiting room for your 2nd blood test in 2 days because your body has let you down YET AGAIN and you need to test by just HOW much it has let you down this time. I was crying while sitting there and I'm sure it's tough for Cam to take to watch me too. Although, again, I look at the bright side of low neutrophils meaning that the chemo is obviously doing something. When I still have to shave my legs, it gets me wondering sometimes, so the chemo is obviously getting into my bone marrow if my cell production is being affected. That is what it is supposed to do, so that's the lemonade there. But it still sucks.

Which brings us up to now - and why the hell am I writing this particular blog? I don't really know the answer to that either, except that somebody asked me recently if I'm doing as well as I seem to be doing or am I faking it. And someone else was worried that I might be putting on an act that I will 'crash' from. I don't think so - but I thought I would post some more realities of a cancer treatment journey that might give some insight into how this process goes (at least for me).

I generally don't blog about that stuff because I don't want to bum everyone out but I did this time so you could see that I do get my 'sad' releases from time to time, which probably enable me to stay positive the rest of the time.

So after all that depressing stuff, the good news is that these immediate few days after chemo feel better than the immediate few days after any previous chemos have felt. I was told that this set of drugs has less nausea associated, although more fatigue. It is too early for that to set in yet for me, so I'm trying to get more accomplished earlier on when I still feel energetic.

Well, hopefully this will give some comfort to anyone who is wondering if I was about to topple from an emotional cliff. I have a positive attitude. But I'm not a robot... I'm going to beat cancer!

Tuesday, January 26, 2010

Dam nutrophils low again...

Last time my nutrophils were 1.0. Yesterday they were 1.1. So when I went in today, the nurse explained that the oncologist requested I have another blood test today to see if they have come up any. Sheesh - is he expecting a miracle overnight?? Anyway, blood test 2 days in a row. At any rate, the nutrophils today were 1.2 which means I will still have chemo tomorrow but at a reduced rate again. Not the same reduction as last time as I am having a new drug tomorrow. Probably about a 10 or 15% reduction instead of 25%.

Today I had my first round of Herceptin, which is a drug I'll have to take through my port for another year or longer after this. I think, but I'm not sure, that the schedule will be similar - every 3 weeks. Tomorrow I take a new drug. Next chemo round I will have them together, this first round of new drugs is the more cautious round to see how I react to each separately before they give them to me together.

Apparently, the new drugs are less invasive to my bone marrow and therefore my nutrophils shouldn't be AS affected....

On another note, my new carpet was installed yesterday. It looks....okay. We have realized that there is definitely a sacrifice for aesthetics when choosing the practicality of something like Berber for when you have 2 dogs. Certainly it looks better than the 19 year old pink carpet.... But nothing I'm screaming home about. The best part about it is that it is CLEAN and PEE FREE. The second best thing is that it is comfy. Thick and squishy.

Also, further to my previous post regarding my head looking like a testicle.... I was thinking last night that if my head previously looked like a hairy testicle, it stands to reason that now that it's shaved, it must simply look like a shaved testicle.... What a depressing thought. I think this has just inspired me to wear my wigs more diligently....!

I promise I won't use the word testicle in any further posts...

Sunday, January 24, 2010

Nothing too interesting....

So I went to my GP at his request last Friday. When I got there, he was asking how I was and then signed my monthly work form. I gave him the latest update and then he was sort of acting as though he wondered why the heck I was there. So I reminded him that he called ME in and so I wasn't really sure why I was there. He told me he wouldn't bother calling me in next time my bloodwork wasn't perfect. And then he said that he would take my blood pressure just so it didn't seem like he did nothing. So that was fairly anti-climactic.

Then I saw the oncologist on Friday. The only glitch there was that I forgot to go, and then they phoned me wondering where I was and then I had to rush out of the house to get to the cancer clinic. Again, I wonder why I go to the Onc every 3 weeks. They ask me how I'm doing and that's pretty much it. But this time I wanted to hear the results of my heart scan, and so he told me it was excellent - 70%. Which is higher than last time, so I told him that I figured chemo must be improving my heart function... (as a joke, of course). His response was to tell me that the scans are not very accurate - which I already knew from the first time when it showed 51% and they freaked out and retested me and it came out at 65%. So it is very reassuring (sarcasm) to know that the tests are not very accurate.

Since I haven't lost any more hair, I still had a sparse covering of hair on my head that I was trying to let grow to see if it would fall over eventually and give me a sort of chemo combover. It wasn't working out like that so I finally decided to buzz it off. And then it was too 'pokey', so I did shave my head - which seems to be better and I haven't yet experienced velcro-head, so I guess the secret is to keep it shaved. A friend told me that it looks way better shaved because when it was growing longer, my head was looking like a testicle. It's good to have such love and support when you really need it, isn't it? Of course, not enough love there to tell me my head looks like a testicle when it still LOOKED like a testicle - but better late than never, right? I guess I won't rely on him to tell me I have broccoli or pepper in my teeth either.... unless I've already taken care of it and he can tell me that I USED to have something in my teeth.... LOL. Well, the other disturbing part of this story is that it keeps making me think that I must know what HIS testicles look like now..... Is that a good or bad thing? Yike!

I finally made my first meaning contribution to the renovations. I painted a first coat on 5 door trims. I was proud. Cam appreciated it, but he had to paint the second coat. Carpet gets installed tomorrow for the stairs and hallway.

Tuesday and Wednesday I go for Chemo #6. It gets split over two days so they can monitor for any allergic reaction. After that, I get them on the same day - but it takes longer. Tuesday will be 3 hours, Wednesday will be 4 hours. Chemo 7 will be 6 hours, 7 will be 5.5 hours and 8 will be 5 hours. BUT, they tell me these drugs are easier on the system.

So, I guess that's it! I will probably post again a few days after the new drug chemo to let you know if it really IS easier on the system....

Tuesday, January 12, 2010

Just Checking In...

So it's been a week since my 4th chemo. At the 75% dose, it was presumed that I would feel less crappy. It didn't exactly work that way - I threw up for the first time on chemo night. But it was a shortlived session and I felt better afterward. I have been generally tired and lazy and just not feeling the greatest but I think I'm on the upswing of that now. I always feel the most 'bleh' the several days after chemo.

3rd round, I did not get the several really painful canker sores that I had in the 2nd round. I did get one at the corner of my mouth, plus a cold sore - but it was way preferable to those darn cankers. But I am prepared, just in case - having been provided some sting-free canker meds from a friend. VERY much appreciated! Orajel works ok after you get over the burning sensation of putting it on but I'll be happy to try sting-free.

My GP called me in to see him - says my blood is low. Knew that already from chemo, but he obviously has something he wants to talk to me about - perhaps nag me about taking my multi-vitamins and iron pills. I have no idea why, but I have been negligent in taking them regularly. I think it's because the new multis that I bought smell and taste bad. The first ones had no smell or flavour. Perhaps it's worth it to just get another bottle of the first kind and pass along these smelly ones to someone less picky... That probably is the answer - I can't think of any other reason why I wouldn't take the multi-vitamin. I will find out specifically what his concerns are on Friday.

I find myself more tired now - doing something motivated for 10 minutes and then needing to rest for an hour. I got really motivated today and was out and about most of the day - but when I got home, I was bagged and fell asleep for 3 hours. That does not work well for getting a proper sleep pattern as now it is 1:12 am and I am not sleeping.

My eyelashes and eyebrows are getting really skimpy now. I used eyebrow powder for the first time today. The onco says eyelashes don't usually fall completely out, but I have very few left and am only halfway through, so I'm not holding out much hope of keeping any lashes. He also went to great lengths to explain how weird it is when someone has no lashes and you don't really notice exactly WHY they look weird right away... This guy is not my regular onco - only the fill-in one, and while he is a little funnier and more animated, he has said a few things to me that I think I would prefer he had kept to himself. My own onco is much more professional and less garrulous. I think I might be happy to have him back... But, I actually have very little contact with them. A quick appointment every 3 weeks before chemo where they ask me about my side effects and then off they go to the next appointment.

We're trying to beat the HRTC deadline for renovations - now we're in the market for a new kitchen, plus floors and I have to get some carpet too. Send any recommendations my way. It seems a little odd to imagine my kitchen NOT having pink shiny cabinets - but I'm happy to make the effort. Rancid pink cupboards....

Until next time!

Tuesday, January 5, 2010

Halfway there!

So today I had 'low neutrophils' (I have no idea if that's the right spelling). So I was given a 75% dosage of my chemo drugs. If my neutrophils are over 1.5, I get the full dose. Between 1 and 1.49, I get 75% and less than 1, my chemo is delayed. Mine was 1. PHEW!!! Just cuspy there.... naturally I'm a little concerned about getting less medicine however, they assure me that my body calls the shots so they can't give me more than I can handle.

And the frustrating part is that there isn't anything I can do about it. I can't get more rest, or eat healthier or take vitamins in order to promote this neutrophil regeneration. I just have to let it do what it will do.

I'm sure I've mentioned it before, but I hate my port. Oh everyone says it's the greatest thing - and I'm sure I wouldn't like ongoing IVs either, but it hurts when the port is accessed and MORE importantly, the port itself is just irritating because I can feel it at all times. And when I lay on my right side, the muscles bunch up and it pinches in there, and if I lay on my left side, the tube bulges in my neck, and it is quite gross all around.

I'm happy to report that I got no internal mouth sores last round - I had one at the corner of my mouth plus a cold sore, but I'll take that any day over the canker sores that are so painful. So much for my theory that maybe chemo would kill the cold sore virus.... ha.

I've been warned now to be extra cautious with handwashing and avoiding sickness & infection since my immune system isn't back up to where it should be.

But, on the bright side, since I've had 25% less drugs, I will feel less crappy! As weird as it sounds, it's almost a small relief to hear about the neutrophils because I still have to shave my legs, and so I was starting to wonder if the drugs were doing anything. I'd like to tell my body to stop concentrating on growing leg hair and start concentrating on growing neutrophils....

My Christmas decorations are down and on their way to being filed back to storage. Cam has got one coat of paint on our hallway & is working on choosing a new kitchen. Trying to take advantage of the homeowner's renovation tax credit thing that's going on. It ends this month.

Happy New Year!