Sunday, January 31, 2010

Having a Dance Party

It's Sunday afternoon and the girls and I are having a dance party - this time with Christina Aguilera. Moments like these are good for my spirit and soul! It's good to take my mind off the here and now....and the next months ahead of us.

This week I felt pretty good except for Wednesday. I basically hermited (sp? or is it even a word?) in my bedroom for the day. I have to admit, it didn't make me feel any better to be a recluse and I think I started feeling sorry for myself, which in retrospect was a little pathetic. Thursday I pushed through and found that even though I didn't feel great, I felt better than when I was laying low. Again, the balancing act of trying to not do too much but still keep engaged in life.

On Friday I took Portia to the gym. I admit, I was extremely nervous. The port has definitely become more comfortable in my chest, especially since last Sunday. By mid-week this week I was able to lie on either shoulder and be comfortable, at least for a little while - progress! Anyhow, it turns out I can do more than I thought with the port in (and it's only been in a week and a half). We'll keep testing it, but with modifications we were able to work out most parts of my body.

The hair. Oh the hair. It falleth out. Here is a picture of two little friends I made, one last night and one this afternoon.

Gross, right? I've decided to chop it off into a pixie cut tonight although I've no idea how long I will be able to enjoy it; at this rate I will be bald by the end of the week! So far I'm dealing with it. I'll post a pic of the big chop later tonight or tomorrow.

Tuesday, January 26, 2010

3 down....9 to go....

I think she and I will be good friends. The poke of the needle was a little surprising and I'm sure some large coating of Emla will fix that small problem. We had good blood return right away and the drugs were delivered with no technical issues.

Unfortunately Miss Portia didn't help me tolerate the Dirty Dacarbazine. It didn't hurt going in, but we had to slow it down to drip over an hour and a half due to nausea. That means my treatments, for the time being anyway, will be more like 3 hours long.

*Note Barbie bandaid covering up little baby stitches in my neck.

Meet Norma

Ron's Mom accompanied me to this week's chemo session. We had some awesome nurses and everyone was really chatty and fun. It was more like a coffee date than a chemo date! We also met a nice woman who was having an experimental treatment post-breast cancer. She was very encouraging, especially when she told me that Hodgkin's was the best cancer to have. CHOKE! So sick of that comment!! She meant well's just that, well, I still have to have chemo! In fact, Hodgkin's patients have pretty nasty chemo (and some patients have radiation as well). It's a long treatment and not a heck of a lot of fun but yes, it at least can be "curable"

Meet Emira

She's my feline companion through treatment. Notice how she "hugs" my arm? We spend countless hours in bed together and I think we both really enjoy it! She seems to sense when I need her with me and I am really so happy to have her companionship right now.

So, that's where I'm at this week. I feel pretty good but very exhausted. I started taking some heavy duty sleeping pills last Friday (just for 3 days) to see if I could get some rest. One of the nights I got a phenomenal rest, the other two not so much. I have some trouble falling asleep and then I have difficult remaining asleep (often waking up ~6 times per night). If I can get this under control, I'm sure I'll feel a bit more like my old self. Also, I am still learning what my body can handle and when to put myself in a "time out". Other than that, I am feeling ok really. And I have a great post-chemo glow. It's bizzarre, but my cheeks and chest get quite pinky for a few days after treatment. It makes me feel like I can get away without any make-up (love that!). Oh and on the hair front, I think I pulled (while washing my hair and rinsing) the most hair that has come out at one time today. It was a bit freaky but also addictive, like I couldn't stop running my fingers through my hair to see what would come out each time. I know, I'm twisted.

Friday, January 22, 2010

WOW! and port update

I saw the evidence this morning so I know it's true, it just seems a little hard to believe....chest tumour is gone! We did an xray (and labs) this morning at the hospital and the results are all good. The chest tumour has shrunk so much that you can't see it (it could actually be completely gone), and my labs look really good (again). What does this mean? Well I don't know about any of my other tumours but it is probably safe to assume that they are all responding to treatment. This does NOT mean that my course of chemo will be shortened (I wish!) but means that we are doing the right thing for me. My counts are strong and, according to S, I am not likely to have any real hiccups in my chemo plan (barring any infection) as my body really seems to be able to recover well from treatment. This I attribute to my overall physical health which, if you don't count the Hodge, is excellent. SO people, make sure you get in shape and stay in shape and then if the Hodge descends on you (or some other lame cancer) you can kick it in the you know what when you need to!

So here is a picture of my port site as of this afternoon. It is somewhat uncomfortable, especially when lying down or trying to do something over my head (like getting a shirt on). It looks a bit weird, but according to S it is totally fine. I bought some topical freezing for it that she suggested I put over the port site a half hour or so before treatment so the needle doesn't hurt too much going in. I suspect it will be a lot more sensitive the first time it's used as it is still healing and then it will get better and better. The creepy part of it is that I can feel the wire over my collarbone. For some reason that just really bothers me. You will notice the Ariel bandaid just above my collarbone - that is covering up the insertion point of the wire and its associated stitches. Just looking now at this photo...don't mind the lump on my shoulder, that's just there because I separated my shoulder back in 2000 playing soccer. Wow, I sure am pretty, huh?

Well, my MIL is coming tomorrow to accompany me to chemo and help out for the week - lucky gal! Here's to the port healing quickly and me getting back to my new normal soon.

Thursday, January 21, 2010

Port, not the wine kind

The port is finally in. I have to report that it actually WASN'T as bad as I feared it would be. First of all, there was a VERY cute South African doctor doing my procedure. I told him that as long as he kept talking in that accent the procedure would go just fine for me. Additionally, sedation (conscious) was available - THANK YOU GOD! So while I'd had 2 Ativan prior to the procedure, the dosage was so low that I could still have some iv fun drugs to make it all go even easier. The downside of taking those drugs was that I had to wait for a few hours in recovery. The upside was that I barely remember the procedure except for all of the very cool looking xray machines and ultrasound that they used to guide the wire into my chest. I really would have liked to have taken a picture of it for you all, but apparently the hospital has some strict rules about these things. Instead you get to settle for this hot pic of me in recovery, looking very out of it:

There is an absolutely ridiculous amount of tape on my neck holding the dressing on that very small incision (cute doc promised it would be tiny) where they insert the wire and tube. I've been working at it slowly all day and can now actually move my head to the side a bit. The nurse who did it must not have liked me as I discovered that the tape is over my little tiny neck hairs - you know those hairs, the ones that really kill when they get pulled...Ahhhhh!!! Of course, I'm not supposed to mess with the dressing for 48 hours, but who can resist the urge to pick?!

I haven't really touched the port itself yet so I'm not exactly sure where it is. I think there is a good deal of swelling and it's quite tender where the skin has stretched to be over the port. The doctor told me that the incision would be smaller than the one for my neck biopsy so I am hoping for that....but am not going to believe it until I see it. I haven't been messing with that dressing at all as it is far less sticky than the crazy tape they used for the top one.

So, the reveal will be tomorrow, at least for the upper incision....the port one I believe has steri-strips on it so it won't be too visible until they come off for Monday's chemo treatment. On that note, I cannot even believe that Monday is just around the corner. Sigh.
Tomorrow is potentially a big day for me at the TBCC. I am getting my regular labs done but also getting a new chest xray. It SHOULD show some improvement in my tumours (if not the disappearance of them). They say that after the first few treatments the nodes will have responded. Quite frankly, I don't know what to think. Of course I'll be very happy and relieved if they are shrinking or are gone, but what happens if they are not? I'm sure they'll be shrinkin' though..they better be...Tune in tomorrow for the reveal and xray results!

Tuesday, January 19, 2010

Port tomorrow...yay me

Tomorrow is the big port insertion. Really looking forward to more surgery. Anyway, on that sarcastic note, I must admit that I am looking forward to laying low tomorrow afternoon as I've definitely been burning it this week.

I received my medical reports today. I requisitioned them from the TBCC so that I could have my own copies of all of the diagnostic results. I found a number of interesting things and one troubling thing which I shall investigate this week. More on that if it is as troubling as I read it to be.

Last, I'm pretty annoyed with the Dexter guy. So he announces he has Lymphoma, says he's in remission and finishing treatment and that it was "fine" and that he's "fine". His comments from the post-Golden Globes interview seemed rather flippant if you ask me. It made me feel like he's telling the world that Hodgkins is no big deal as he was joking about it. Now, I am all for joking about it....just also give it some truth. You know, balance your comments. I'm sure that chemo wasn't a breeze for him. We don't need to know the details but at least please don't act like it was a walk in the park. Perhaps I'm particularly sensitive to this subject, but I just don't agree with minimalizing the disease. Ok, done. Stepping down from soapbox and into bed.

Monday, January 18, 2010

Last week was UP and down

Last week was a strange one. I felt really good right after my chemo on Monday. I even felt really good on Tuesday and got to see Anthony Bourdain (yay me!). Wednesday I felt a bit off but no nausea until late in the evening so I ended up getting to see Sidney Crosby play (we were offered tix in box seating so I thought it would be a "safe" way to see the game). Thursday though, was quite unpleasant. By Thursday afternoon my body was SO exhausted I could barely manage to keep upright. I felt headachey, nauseous, and annoyed. I hate how I was tricked into feeling good and then WHAM! Friday morning was ok but I was feeling better by Friday afternoon and even managed a slow, controlled work-out with my personal trainer. Saturday I felt sort of better and ended up un-decorating the house and tree (yes I still had the Christmas stuff up!) but by Saturday night I was crashing again and was totally exhausted on Sunday. I just wish that my feeling shabby had some sort of predictability to it. It's sort of getting me down, I'm a schedule kind of gal and this cancer business is messing me up. Additionally, I have to say it, I am really upset about Haiti. I mean, what did the Haitians do to deserve this earthquake? These people have been living in absolute squalor and poverty (the majority anyway) for years and years and then this. I think about the Haitians all the time, I really wish that money could fix the situation but I believe that the problem is much more deeply rooted than that. So excruciatingly sad.

Last week at chemo, one of my nurses was asking about the wig thing again. Apparently my hair will be departing any day fact, I just had a shower and had quite a load of loose hairs in my towel and in my fingers and in my comb afterward. Sigh. Anyway, last Tuesday I contacted the Wellspring place in Calgary who told me to contact "Compassionate Beauty" here in Calgary regarding wigs (I was thinking that I should at least start the research). The woman I spoke to at CB told me that I should come in asap so that the wig person could see my natural hair and that would make any future wig ordering much easier for colour and style. So Wednesday I stopped in (along with a good friend who had a spare hour in her busy day) and actually got fitted for a wig. I thought I was just going for a consult but I came out with a partial wig ordered, some fancy follicle shampoo, and a scarf. They also wrote down the wig that I'm likely to order when the supposedly inevitable happens. Admittedly I felt a bit shocked by it all. I probably wasn't even in the headspace (haha) for a full wig fitting appointment. I had intended to get a few people together for a wig shopping expedition and have some laughs while doing it. Luckily I still had a few laughs. I also had a few tears. CB is very good at what they do, this whole thing is just a bit rushed for me. However without further it is!


This was the wig used for the colour match ONLY! Anyway, I am still planning on buying a few "fun" wigs once my hair has fallen out and I've adjusted to the whole concept. By then I'll likely be in a better frame of mind for a fun night of wigging out!

Well, lots on my mind today. I also woke up with a sore throat that has lasted all day and a bit of "the shakes" all day. I am off to do my labs (and drive Addison to dance class) for my procedure on Wednesday. Thanks for stopping by.

Tuesday, January 12, 2010

2 down 10 to go

Chemo treatment #2 has come and gone. So far I'm feeling pretty decent so perhaps some of the tips I received from S last Friday have paid off. No real nausea to speak of but I did not sleep well at all last night so am very tired today.

My Mom went to chemo with me yesterday. We were scheduled to start at 8:45am and we were pretty much on time. I was thinking while we were shown into my spot that 2 weeks ago I must have been given the 1st timers VIP treament with a bed and nice little cubby. This week was a plastic green lazyboy style chair which was about 1 metre off the nurses station and against a wall with virtually no place to move around. Interesting. No tvs/DVDs either. Total rip off. Anyway our first nurse (one of four yesterday) actually managed to find a vein. I noticed I had a juicy one on my left hand, it's been good like that from working out I think (3 work outs last week!!). So that actually went well as did the first 3 drugs. However, that dirty Dacarbazine got me again, in a different way this time. The third nurse started the drip of dD and it felt a little bit funny to me. She went to the nurses station and I said to my Mom, "hey, um can you go get her, this isn't feeling right". By the time they got back my forearm hurt so bad I could barely breathe and it was also ice cold. So we stopped the chemo, found some hot packs and a heating pad that worked and turned on the saline pump as the gravity wasn't pulling enough saline to counteract the dD. Try number two. Already starts hurting a few pumps in. Oy. Change the saline bag, turn down the dD, try another 2 heating pads, finallly get them working and we are set. But, by this time we are really running late. Additionally the dD goes in really slowly as it's been turned down so much. The upside is that I don't feel sick from it like I did last treatment, the downside is being there until noon, an hour longer than I would have expected. Anyhoo, I felt so good after the treatment that I even drove myself home!
I had a few naps yesterday afternoon which were probably my undoing last night as I had a very difficult time falling asleep, even with Ativan to help me. My husband woke me at 5:30am to take my Kytril (anti-nauseant) so that I would hopefully avoid the "morning sickness" I had last time and, believe it or not, it seems to be working. I've had virtually no nausea, just fatigue, and a very mild headache. So perhaps I will go to see Anthony Bourdain cool would that be?

Friday, January 8, 2010

Chemo Brain Already?

I think the chemo is affecting my brain already. I can barely remember all that has happened this week other than getting very annoyed that my port can be inserted until the 20th. That being said, I do recall having a cardio-pulmonary test on Wednesday afternoon in which I believe I showed normal results. I also know that I went to the gym yesterday for a work-out with my trainer because my legs and bottom are so sore I can barely get up from sitting or sit down from standing. I also recall that my 3.5 yr old had a major melt-down when I left for my appointment at 7:30am this morning. I think she's starting to notice how much I've been gone and that sometimes when I'm here, I'm not all that here (ie. so tired that I can only move like a slug). I feel terrible about it but I have to admit there is not that much that I can do for her. We went out for several hours together yesterday but apparently that's not enough for her. Sigh.

My appointment today went alright. S said my labs were superb but when I took a closer look at them I noticed how my white blood cell count, hemoglobins, and neutrophil were kinda low. I guess they'll just keep getting lower through this whole process. The whole thing is pretty interesting to me. Anyway S and I had a good talk, I only had a little cry, and in the end I was feeling pretty good about chemo #2 and the port insertion. I also got a few tips and prescriptions for managing my nausea and sleep issues. Hopefully some of this new information will make next week a bit easier. Heck, who knows, maybe I'll go out somewhere after all?!

Wednesday, January 6, 2010

Insomnia Reigns

It's 12:31am and I really should be sleeping. I worked out today (at the gym!) and shovelled snow off of the driveway, cooked dinner, and ran errands. I should be exhausted and yet I am wide awake. I don't like this one bit!

The news of the week is that the port is NOT going to be "inserted" (as they put it) this week. They tried to book it for the 13th but I declined on the reasoning that I should not have to have more than one unpleasant procedure in a week (I have chemo on the 11th). SO, I am now scheduled to have it inserted on the 20th. I've also been informed that I am not getting anaesthetic for it. I consider this to be cruel and unusual punishment especially given my last "minor" surgery with my neck which turned out to be less minor than promised. Yes, I am grumpy about this bit of news.

Tomorrow I am going for a cardio-pulmonary test at the hospital. I was on the phone with S this morning and I mentioned to her that I've been having mild bouts of being short of breath after doing things. It's a weird thing because I am in pretty good shape cardio-wise and it also doesn't always occur. For example, I was rushing around the house this morning getting ready to go out and organizing a few things and I got short of breath, but I didn't get short of breath shovelling the snow. Very odd. I was out of breath for lots of my work-out but I sort of expected that to happen after not working out for 4 weeks. Anyway, I am off to get checked out tomorrow.

Friday of course is lab and check up day at the Cancer Centre and then it's the weekend! My Mom is coming on Sunday so that she can make fried chicken for my husband and also look after me next week. I'm a little bummed about a few things next week though - I got my husband front row seats to see Anthony Bourdain PLUS VIP tickets to the reception to meet him afterward. The event is on Tuesday so I'm not very confident I'll make it....ok there is pretty much no way I'll be up for it....(Bourdain is a chef and also has a travel/cooking show called No Reservations and we've eaten at his NYC restaurant Les Halles a few times). The other annoying thing I'll miss is the hockey game on Wednesday night when the Penguins are in town...really wanted to see Sidney Crosby play as I've not seen him live yet. Sigh. Friggin' cancer.

Well, perhaps the herbal remedy has now kicked enough that I will fall asleep as soon as my head hits the pillow. Perhaps not, but I am out of pertinent issues to speak of....g'night.

Friday, January 1, 2010

Feeling "normal"?!

In some ways I feel like I will never feel "normal" again. I mean, I'm basically poisoning my body with the chemo, the anti-nauseants and the tummy meds, but today I am feeling pretty normal. Only a couple of waves of nausea this morning and that's it. It's a huge relief to know that I can participate in life again without feeling like I will toss my cookies! On a down note, my Mom and Dad left this morning to go back home. I am nervous about handling things without them here but maybe it's also the push I need to get back into life after taking a 3 day hiatus. Anyhow, just a short note for today, no update on my surgery next week, and looking forward to going to my last hockey game of the year tomorrow night with some good friends - last hockey game as it won't be worth the risk of infection going forward (big crowds and all).