Where to start....or Part 1 of the last few weeks

I guess I'll start back a few weeks ago when Miss Leanne came from Vancouver to visit me and accompany me to chemo...

Saturday, May 15th - Leanne arrived from Vancouver, Ron left for Aberdeen (Scotland). Us girls (me, Leanne and Leanne) got to go out for a fantastic dinner at Mercato (while Norma, my MIL, babysat for me) in Mission. I went out "bald" which is always an interesting experience. We had great conversation, amazing food, and I loved getting "out" as it hasn't been a priority as of late. Sunday the girls met for lunch and then a bit of shopping (again courtesy of Norma babysitting). We visited Sunday night over popcorn and wine....it was a great lead-up to my 2nd last chemo infusion.

So, here we are having a fun chemo session. Lots of magazines to flip through, yummy Good Earth lunch, and lots of laughs. Thank you Leanne, you made it go so fast!

Leanne left that night and I felt fairly well...and then I started to go downhill. It's amazing how much more difficult post-chemo has been getting. The lingering nausea and absolute exhaustion rendered me fairly useless for the week. No working out AT all and lots of sluggish behaviour. And I missed my husband. I was a more than a little pathetic. I did get some good news that week, my PET scan was scheduled for June 22nd.

Regular living took over on my "good" week, but I was still dragging. I managed 2 work-outs with my trainer but between those and doing some errands and regular life maintenance I still wasn't my normal self (whatever that is anymore). Also, there was a lot of build-up to the LAST chemo. Additionally, my head has been swirling around the "next steps" portion of my cancer journey.

I had my labs on Friday May 28th and interestingly my counts were low, neutrophils 1.7. This wasn't worrisome but continues to baffle me although I should know by now to expect the unexpected.

Here is the last mililitre going in...

And...that's it for tonight. So so tired.

Oh Eyebrows Where Art Thou?

I'm not going to say I've ever had a STRONG eyebrow or bushy caterpillars framing my eyes, but this is a bit ridiculous. There is hardly anything left of my eyebrows and, like most of the other hair on my body, it's fallen out in the most gradual fashion you could imagine. Again, not like I'm a super hairy person, but still, this is basically like having no eyebrow, and as you know, no eyebrow, no expression! I'm "ok" at filling them in with powder, but if they get any thinner, I'm not sure how I'll do it. The other curious hair-related item is that my armpit hair has apparently completely fallen out. This is strange because my leg hair is still growing (yet thin and slowly). I just don't understand (not that I'm exactly MISSING my armpit hair) but, what else is new?

This is my big sister Jo-Ann and I at chemo last week. Unfortunately for her, it was the LONGEST wait ever for a treatment (took over an hour before we were called) and we had a grumpy nurse. Other than that, we were allowed a mostly uninterrupted visit (rare since we both have little ones) which was a treat. Treatment actually went at break-neck speed and we were out of there fairly quickly.

This past week I really started to realize that I'm not bouncing back from treatment as easily as I did at the beginning. Not a shock but I once again cancelled my training appointment, napped a few of the afternoons and went to bed super early every night. The kids (ok the 4 year old) were exhausting at bath/bedtime, mainly because Daddy was in London this week. He's home now until Tuesday (when he goes to Toronto until Wednesday night) and then he leaves Saturday for Scotland. Sigh.

Feeling Introspective and Trying to Get Perspective

I think about my Blog all the time. I have so many thoughts that I'd like to write about but so little time/energy to do so. Some of the thoughts are a bit random. Others are dark. Lots are amusing. Right now, I am feeling as exhausted as I've ever felt (maybe even more than the late days of pregnancy!). I'm sleeping well at night (thanks to Ativan) but it doesn't seem to make a huge dent in the overall tired side effect that is month 5 of chemotherapy. I'm not shocked by this (and neither are my caregivers) but I do feel a little annoyed with my inability to go full tilt.


Things that make me feel good (in random order):

Getting emails from people - especially when they don't complain about me not replying in a timely fashion!

Shopping (mostly online) - especially when it's not for cancer-y things ALTHOUGH I did get to spoil myself at Hermes the other day:

Eating - this is a BAD thing and sometimes causes its own problems - like eating tonnes of salty snacks the other day and getting mouth sores from it (brilliant). I definitely like having my comfort foods though, anything starchy/carby, you name it, I'm eating it.

Working Out - with my trainer I enjoy my work outs (which, due to the previous comments is fortunate) but am only working out about 4 times in 2 weeks. I try not to dwell on this low number, but at the same time, I am starting to gain some weight. Perhaps less eating is in order? Nah.

Fantasizing about vacations - seeing we cancelled all of our trips (California and France) until July, I enjoy thinking about where we will go once I get the green light. We already have a few things booked and I am really excited about getting out of Calgary for a while. I like this city, and fortunately we had a very mild winter, but I don't recall ever being stuck in the city all winter before. It sucked.

Dreaming about being healthy - and dreaming about being back in great shape and taking tennis lessons, playing golf, and being in the sun (although I won't be in the sun much this summer due to side effects of chemo).

Thinking about a big celebration party - we would like to do something, maybe in August? Get super fancied up and feel good about myself, sounds like a good time!

Looking forward to being a "good" Mom again - I try my best. I really do. Sometimes though, with the fatigue especially, it is difficult to have patience. I lose my mind at least 5 times a week I'm sure! I think this will even out once I can become a more active participant in their lives again. Going to the pool, the mall, out for lunch....I can't wait for all of those things!

Looking forward to being present as a wife/partner again - I am extraordinarily lucky to have the husband I do. He's been supportive beyond what I thought was possible and puts up with all of my crankiness and moods. I'm excited to be fun again in his eyes. Here is my incredible man (and btw, I say this EVEN THOUGH I'm mad about all of his travelling this month!!! haha)

Of course, I am also filled with other thoughts these days, especially nearing the end of my treatment. I don't want to write about these thoughts right now. They are there, hidden away in the dark corners of my brain. I have fears and negativity. I am far from the perfect cancer warrior. I am human.

I am still also thinking a lot about the lack of information about blood cancers that is out there. People assume ALL THE TIME that I have breast cancer. Perhaps I need to bring Lymphoma's "sexy back" - not that it ever was sexy (that I know of anyway!!). I will do something for Lymphoma awareness once this is all done. I promise it.

Still taking it day by day....

This is me and my friend Heather - a true cancer warrior - at my last chemo (#9). Chemo went well, had one of my fav onc nurses and we were in and out without incident, enjoying a nice Good Earth lunch while we were there. Of course, there was the VERY strange fellow across from us who was attending his wife during chemo....actually he spent more time talking about odd science facts then talking to his wife....it was definitely a situation where you had to be there to understand - right H?

Anyhoo, after coming off a pretty much sensational 2 weeks prior to this last chemo, I definitely had some expectations that things would be really good (maybe caused by the change in chemo cocktail or something). However, as luck would have it, I had one of the rougher weeks in my chemo history. Mainly I had lots of nausea which was tiring and totally bummed me out. Additionally, it was a busy week with birthdays and the like. Luckily by Friday morning I started turning the corner, and on Saturday I was well enough to take the 4 year old to soccer.

Like I said in the title, I'm still taking it day by day and on Sunday night, after eating birthday junk food all day long, I realized that I'd developed a nice case of mouth sores. Sometimes it feels that I just can't win!

B+ for CT Results

As quickly as possible I will reveal my results. I've been moping about them all weekend and have not wanted to think about them that much.

My main large tumour on the right side of my neck has shrunk significantly. It is borderline abnormal. There are no other significant lymph nodes on either side of my neck (great news).

The cluster of tumours in my mediastinum (chest) has also shrunk a lot. It is a little bigger than borderline but is still looking pretty good.

There was a measurment of a new lymph node in my right lung. It is VERY small and grew from .4 cm to 1.0cm. 1 cm is still borderline. They aren't too sure what this could be - measurement error or perhaps just something caused by the cold I had/have and the cough I am still fighting.

These weren't rock star results but, overall, were positive in nature. However, me being the person I am, I wanted ROCK STAR. And, to be honest, they had lead me to believe it was possible that the tumours would be totally unremarkable by now. Anyway, I still have 4 treatments (that oughta do it).

My cough is becoming very annoying. I'm being sent for another cardio-pulmonary test, hopefully this week, to see what's going on. I think it's just a lingering cold effect but we need to rule out the Bleomycin causing any serious lung damage.

Last, my labs were bizzarre this week. Neutrophils were 4.5. I have no idea what that is all about and nobody seemed to be able to offer an explanation. Perhaps it was cutting back the Vinblastine? Perhaps it's just a crazy one-off? Very confused about that one (and my WBC was high and RBC was low). Who knows? What I DO know is that I had 2 weeks of feeling, dare I say it, normal and I really enjoyed them. Hopefully tomorrow doesn't send me off in the other direction.

Scan and Such

I have complete and utter disdain for CT Scans. Contrast drink tastes like copier fluid (or at least a "light" version of it). The last few cups you have to drink of it trigger the gag reflex (1.5L is the norm). Then you change into your gown and robe. Then you nearly freeze to death until they can cover you in warm blankies (cold because the lack of clothing AND the fact that you just drank 1.5L of cold fluid). Then you lie on the table. Then you get a large iv needle dropped in you. Then you wait for the dye to be shot through you. This particular sensation is definitely the WORST part of a ct scan. First you feel a warm sensation running through your innards and that is quickly followed by an indescribable taste in your mouth and then you feel like you are going to pee yourself. If you are lucky (like me) they shoot the dye through twice. Once for the lower parts (abdomen and pelvis) and once for the upper parts (neck). I know it's just a scan. You would think that after 8 treatments of chemo that I'd "butch up" a bit, but cts are gross. Plus, you have to wait a week to get your results. Sigh. I'll get my report card on Friday at my regular check-up appointment.

My husband shaved my head for me today. My hair was looking really strange. There were definite bald patches and the little bit of length I did have actually sort of made my scalp ache when I would take off my head covering. It was VERY interesting to see me so close to bald. First of all, I knew I had a couple of small scars from stitches but had never seen them before. Second, we discovered a "stork bite" birthmark at the back of my neck/bottom of my head (it's kind of neat because my littlest girl has one there too). Third (and now I will sound like a braggart but whatev, I have cancer, what can you say?), I have a GREAT head shape! Fourth, I look REALLY sick when I don't have any make-up on. I have provided a photo for you but please be warned, it's HIDEOUS!! Ok maybe not hideous but I definitely look cancer-y.

Also note my lack of eyebrows....they are slowly falling out and are super blonde to begin with...

Sorry to scare you like that. The reality is that you'll likely never see me with no make-up, BUT, I see myself like this a lot. Sometimes it is hard to face. Other times I honestly just have to laugh. Luckily I am going through a "good" stage right now and can find the humour in the otherwise grotesque!

Numero Huit

The eighth treatment has come and gone and I must be on some kind of upswing here! My attitude has been improving and I'm feeling like the end is in sight. I had an amazing Easter weekend. I was blessed with some time to go shopping with a friend on Saturday and it was so nice to get out like a normal person! Saturday night Ron and I got to go out for a fancy going-away dinner for some of our best friends, and Sunday was a fun Easter day with egg hunt, and lovely dinner with family and friends.



Here is my friend Lana and I at treatment yesterday:
















Thank you Lana for the visit - it was exactly what I needed yesterday to get through the infusion!

I'm determined to have a good week this week. I am still battling my tummy issues but am trying to remain upbeat. Part of what's made this possible is actually letting myself "let go" a bit and not worry so much about everything being perfect. Also, I'm back to the art of planning and lists so that I feel a little more in control of my situation. I am really missing working out and am hoping that I can start working that back in to my routine.

Then again, this is Tuesday. Normally I don't feel "bad" until late Wednesday. Hopefully my new 'tude can hold regardless. Additionally, I have my big CT scan on Thursday morning. I hate CT scans. All that contrast drink and then the IV dye. Yuck. However, it's at 7am and hopefully won't wreck the ENTIRE day!

My head has been swirling with lots of thoughts these days. A close friend forwarded me a very interesting article that I am going to link here because I totally GET this woman! I hope you will take the time to read it and take something from it, perhaps a different way of thinking about people who are fighting this crappy disease. http://www.vancouversun.com/opinion/Cancer+best+thing+that+ever+happened/2752354/story.html
Food for thought anyway!

3 Weeks of....

Where to start? The last 3 weeks have really been my worst since this whole cancer nightmare started. I've had to dig deep (and I thought I already knew how to do that!) and even when I dug to China, I still cracked a few times. Here's a synopsis of the last 2 weeks (as I already blogged about my 1st bout of tummy trouble):

(photo of me getting treated on the 22nd of March with Hubs by my side)

It felt like I was over the abdominal/bowel/tummy issues. I had some new products to use to combat what was going on. I was starting to feel better and actually had one of the "easier" chemo weeks (in terms of my health) since I've started, except that my litttlest one got sick with another coughing cold. She barked for a couple of nights, I took her to the doctor and I actually felt a bit ashamed....because I was worried that her cold would keep my husband and I from heading to Vancouver Island for his Grandma's 90th birthday. I had asked for, and received special permission to go on this weekend trip. My counts have been so good that S wasn't worried I would get sick from the plane or something and I was really looking forward to surprising Grandma at the special dinner (and meet up with family) and also to have a change of scenery, if only for 48 hours. Luckily, the little pipsqueak started to improve and with some help from friends and family we were able to go to Sidney on Friday night.

In fact, on Friday I felt well enough and strong enough to go work-out with my trainer (which I hadn't done in a couple of weeks). I had a reasonably good performance and it really buoyed my spirits. I started to feel excited about the trip and couldn't wait to get on that plane. But, waiting in the airport for the flight, I started to get a very sore throat and run a low-grade fever (yes, I had my thermometer with me). I felt brutal that night but a bit better the next day so maybe it was just a chemo effect? Saturday night at bedtime (9:30?!) I began coughing and that was the start of the cold. My bowels also started to act up so by the time I came home I was wrecked. I think Monday was one of my worst days in recent memory. My body was just not co-operating, I wanted to crawl under a rock.

(this is me enjoying the fresh sea air in Sidney)

Tuesday I talked to S and she wanted me back at the hospital for a chest x-ray, abdominal x-ray, and labs. Yay. More time at the Tom Baker. However, it was a very interesting visit. The chest x-ray was all clear (meaning the cough was definitely due to a viral cold, not an infection or from chemo drugs), the abdominal x-rays showed little change from 2 weeks ago, and the labs were "predictable". Predictable? My neutrophils counted 2.7! Normally (and I normally have my labs done 4 days after I got these done) my neutrophils are 1.3ish (1.0 is the standard required to continue chemo). I asked how it was possible that they could be so high, especially given that I had a bad cold to fight. The doctor explained that it was what she would have predicted - the neutrophils are working extra hard to fight the cold and it was a very good sign that my bone marrow is healthy and that I could actually produce that number of cells. "Cool", I said, "but what about my bowels?, I don't think I can live with this pain for much longer". My doc gave me another new prescription to try, but she also offered an explanation as to why I was suffering so much and what we can do going forward. They think that one of my chemo drugs, Vinblastine, is to blame for my misery. How she explained it is that in some people, the vinblastine basically stuns the nerves in the bowels, thereby slowing or stopping the ability for them to contract. SO, we are going to back off my blast of vinblastine for my next couple of chemos and see if that helps at all. Off I went with hope in hand.

Wednesday I was feeling quite a bit better. Still coughing but almost had a full night's sleep. I had an amazing massage and she even did some abdominal massage to help my poor belly. Today I felt the best I'd felt in a long while. The new drug seems to be helping, I had a good night's sleep, and had fun with my kids. A ray of sunshine in a mostly gloomy 3 week stretch of struggling with health issues.

Chemo Glow

Self-portrait of me with my chemo glow:

Sadly it didn't work out very well, but if you had seen me today you would have noticed very pink cheeks and upper chest. It's actually quite nice and I suppose an unexpected bonus of getting chemo (please note that there are very few of those!).

Strangely, I actually had some nausea today which was bad enough to take some medication for (over and beyond what I normally take). That's the first time since my very first treatment that it's happened (which I suppose is lucky).

Some notes on my hair. I often see myself (sans head covering) and think I look like Susan Powter...sometimes I even say "STOP THE INSANITY" out loud. I'm probably one of the few that think that's funny, but I just can't help myself. My husband, such an incredibly sensitive guy, told me I look like our waitress from the old Break the Fast on 9th Ave in Calgary. I know he was kidding "kinda" but I am definitely owed an extra pair of designer shoes for that comment (and those of you who know who I'm talking about would agree!). I'm actually not that sensitive about my appearance, but I'll admit at times I do miss having some hair!

A Long Week

Last week was to be my good week. It started on Sunday afternoon with finally having the courage to shave my hair down. It was actually pretty "easy" to do - Ron was more than willing to help and so was my oldest. My friends Leanne and Gord came over to help cheer me on and we celebrated by having a barbecue afterwards. A pleasant afternoon really. Here are a few pics:

Then, Monday morning came. I was by myself, with the girls, feeding them breakfast when a wave of nausea sent me running....I spent the rest of the day with massive stomach cramps and was getting very bloated and unhappy. I talked to S at the TBCC and we decided to see if it would clear up overnight....if not, I'd have to go in and get checked out. Of course, with my rotten luck, it was still bad on Tuesday so I set out for the hospital after lunch and ended up getting a bunch of tests and hydration. To help ease the pain they gave me some iv pain killers and anti-nauseants and then they sent me home with some meds to get better. Wednesday and Thursday showed little improvement in my discomfort and then Friday was lab day and they decided to rehydrate some more...by Saturday I was starting to feel slightly better, although exhausted from getting little sleep at night.

Anyway, to make a long story short, I just started feeling better when I had my next treatment to look forward to (which I had today). Yay me! Sorry that I stayed quiet last week, I didn't feel much like talking....I will try hard to blog again tomorrow or the next day.

Halfway Point?

Some have been calling my treatment this week my halfway point. I'm actually thinking that my real halfway point will be the 21st, just before my next cycle begins. Regardless, I'm just happy that I only have 6 treatments left. This week's infusion went very smoothly again - looks like I'm on a roll! My Dad came with me and got to experience the "high-end" cancer treatment as I got assigned a bed WITH a TV!! Seeing the Brier was on, it was rather nice for my Dad that everything worked out so well. I, amazingly, got a short nap in as well. Really, a banner excursion to the TBCC. Here is a pre-nap shot:

It was a pretty quiet day with only 80 or so chemo treatments booked. Service was job one!

As you may have noticed, I still haven't dealt with my hair situation. I guess I lost my nerve or something. However, tomorrow is the big day. It's funny, all week long my hair didn't really fall out and then today it started. My scalp started that funny aching (not sure if I've described it before, but if you've ever had a fancy up-do in your hair all day and then taken it out, that's exactly how my scalp feels) and sure enough the hair started to fly. Quite frankly, I've had about enough. Enough with trying to cover the bald spots. Enough with having to clean the bathroom after each blow drying. Enough with finding hair in my toothbrush everyday. Enough with thinking about it. Enough with cancer deciding when and how my hair will fall out!

The next question will be....how will I work the new look into my life? Here is one crazy preview:

Hair and a few other Things

For the people who can't see what's going on with my hair, I've provided a few photos to help you out. From a distance it looks pretty decent but as you approach, you can see the "air-conditioning" for my scalp that's been provided by several balding patches. Judge for yourself.

(Left side)
If I style it perfectly, it's not TOO noticeable but God forbid it's a windy day! I think it's bothering me more these days because of the front area. It's difficult to avoid seeing it everytime

(Front/Bangs)

I look in the mirror.

On Friday at clinic, I talked to the nurses about shaving it down (cropping) and they encouraged me to do it for several reasons, the most important to me being that it's an opportunity for me to take control of the situation. So much of what I am going through is out of my sphere of influence that this provides me with at least a small modicum of control (and being a type A personality this makes me a happy girl). I was planning to shave it down today but it looks like I might wait a few more days....maybe do it late Friday afternoon or something. I know it will definitely be in the next week.

My scars to me aren't looking great as of yet. Portia's scar specifically is giving me trouble - it's very itchy and I can see the supposed disovlable stitches are still hanging out under my skin. The excisional biopsy scar and the "wire" scar are super purple-y red. I guess my uber-weiss skin does not improve this aesthetic. Not sure if this pic I took with my BlackBerry does it justice...

The good news is that my labs were great on Friday (Neutrophils 1.4) and in 2 weeks I'll officially be at the half-way point of treatment. I also have a CT scheduled for April 8th so we'll know what's happening with all of my tumours (I'm assuming they are completely gone). My doc also mentioned that she will schedule me for a PET scan after my treatment is over. I was excited to hear that because they don't have to give me a PET, they could've opted for a CT. We'll see what happens, but one way or another I will get a PET, even if I have to go to Vancouver and pay for one. I really will want that peace of mind.

Can you believe it's been 2 weeks?!

Wow. I've taken a little heat about not blogging much lately but I didn't realize it had been 2 weeks since I'd written anything. Luckily I can report that I haven't been super ill or super depressed, just super overwhelmend and tired.



Our house finally got hit with a bug, one which both girls had for over a week. It was a LOT of coughing, so much so that Addison had to get an inhaler, and Elise just hung onto it forever. Needless to say, there wasn't a lot of free time as neither girl went to school or lessons for 2 weeks. Interestingly, I did not get sick. Even when my WBC counts were at their lowest, I was "fine" AND when it came time to do my labs, they were the 2nd highest since the start of January. I've no idea how that is possible but there you go! Of course, the day after I was at the hospital for my check-up and labs, I did come down with a stomach bug that was just awful and kept me bedridden for 24 hours. Luckily no one else got that!



My last treatment was on February 22nd. My friend Kellie came to entertain me and I can happily report that it was the smoothest infusion of chemicals yet. We almost had a nursing student pass out when we were set to puncture the port, but other than that there was nothing of note to report.



I tried a new drug regime after this treatement in hopes of avoiding the migraine-like headache I've been getting on Wednesday afternoons that lasts until sometime Thursday night. While I had success with avoiding the migraine, I did feel pretty nauseous through Wed/Thurs so I'll do some further tweaking the go round to see if I can get an even better result. I also developed a very yucky taste in my mouth the day after treatment which got progressively worse until about Tuesday this week when it seemed to get better. It was accompanied by a dry mouth and sore throat so I assume it has something to do with the WBC count. It's a tinny kind of taste and, while it didn't seem to affect the taste of food too much, I can imagine that in the future it will. So I guess I should eat and be merry now!

My Mom is here with me this week as hubby is in Scotland for work. My Dad is driving in from the Okanagon today and is planning on accompanying me to my treatment next week. I am pretty tired as Addison has been up almost every night (who knows why?!) and I haven't scheduled in enough breaks for me. Must improve these 2 things or the next few months are going to be murder. Will blog more later (I'm serious!) about my hair situation and a few other things to look "forward" to.

kl

The Ranting is Over (for now)

With Cycle 2 coming to an end (that's 4 treatments y'all) I am mellowing. A bit. I didn't like feeling like I had no control. I still don't like it but I'm dealing with it. Enough said. I think.

Last week's treatment had its own drama. Every treatment seems to have some kind of unexpected surprise - this time it was Portia who was acting up. I had slathered her with Emla cream and was totally ready for the bite of the needle. Puncture went great (very little pain)...except there was no blood return out of the port. Uh oh. I started to panic almost immediately. There is NO way this port is getting removed before its time! So I had to lie down, put my hands above my head, turn my head to the side, cough. Nothing. They decided to re-puncture. Oh joy. Still, no blood return. More panic. The nurse decided to flood Portia with saline and see if it would dislodge the clot (the likely culprit). So, after 15 minutes of saline rinse we FINALLY got blood return (major relief). If they hadn't got blood return, my next step was to x-ray to find out if something was wrong and I have to tell you, I was seriously worried that my working out had dislodged the darn thing!

My friend Hunter (Leanne) came with me. We flipped through fashion magazines and brought cupcakes for the nurses (hero status).

My week was pretty "normal" for a chemo week. Started feeling yucky on Wednesday afternoon, big headache Wednesday night and pretty much all day Thursday, and by Friday morning I felt pretty good. I had an amazing work-out Friday afternoon which was SO good for me emotionally that I can't even begin to explain the change in me from Thursday to Friday!

One of my girls has a pretty nasty cold with an awful hacking cough. I am very nervous about getting it as today is day 7 and this is when my WBC counts start to go very low. Not really sure how I can avoid getting it, perhaps just saying a little prayer is all I can do! To top it off, my labs before my last chemo were a little on the low side, with the neutrophils at their lowest to date. My hematologist was worried enough to come speak to me about it (not that I can actually DO anything about it!) and talk to me about what happens if I fall below the acceptable levels. Sigh. Lets hope that those labs were an anomaly.

I don't have much planned for this week except for trying to avoid mouth sores and getting in some exercise. I have my regular labs on Friday and dinner out with a few friends on Saturday night. Hope everyone is having a pleasant weekend.

I Just Haven't Felt Like Myself...

or looked like myself for that matter! It's been a while since I posted anything. I suppose that deserves some explanation. Last week I was actually feeling pretty down. I cut my hair off last Sunday (it's a great cut, happy with it), then on Wednesday I started getting a really sore mouth and a swollen tongue. My mouth hurt so much by Friday morning that I was tearing up while eating my toast before my appointment at the TBCC. Not fun. My appointment was ridiculously long. I had to wait 45 minutes just to get my blood drawn and then another half hour to see the nurses/doctor and then another hour and some to get my test results. I'm not going to lie, I was getting very annoyed and grumpy. So I started to cry. I cried when I talked to the Hematologist's nurse "C". She was just so understanding and I guess it opened the floodgates of emotion. She examined my mouth and told me that I had some sores (caused by the chemo) and that my tongue was also swollen due to the chemo. Apparently when your white blood cell counts go so low, your mucous that keeps your mouth healthy practically disappears (which probably explains the sore throats I've been struggling with as well) and sores/ulcers can form. My main sore was underneath the base of my tongue and everytime my swollen tongue caught on my molars - OUCH! It was like a firecracker in my mouth.

"S" also came in to see me when she heard I was weepy. Sigh. I hate being weepy. She said that it was totally normal to be upset and we had an interesting discussion of what was upsetting me most (more tears). You see, I don't look like myself. I don't feel like myself. I am NOT myself. It's very frustrating for me to see the slow decline in my ability and attitude. It's even hard to admit that things are changing. I suppose I should try to embrace change, but if I'm to be honest, I'm just not quite there yet. I thought I was. I feel a bit like a failure. The reason I feel like a failure is that Hodgkin's Lymphoma is supposed to be the "good" cancer. "C" and "S" both laughed at me when I told them this well-known fact. C said "yeah, 5 years from now when you are totally cured, it's a great one to have". And S said, "your chemo is not EASIER than anyone else's, this is going to be the most difficult 6 months of your life". It's a dose of reality and I wanted to share it because sometimes I feel like I shouldn't complain, that I don't have the "right" to complain because I don't have breast cancer or something more "serious". I'm sad to report that it's not all sunshine and roses with my friend the Hodge. I'm tired a lot. The whole mouth thing is not cool. My hair keeps falling out. It's winter and I don't get to leave and have a sunny holiday. I'm short with my kids. Ok, I'm short with everyone. I wish I could do a little better and hopefully as I continue this unexpected journey, I will learn how to deal with things a little better.

the hair

From last nights chopathon:

That is all today. I am wiped out after a big day of laundry, working out, and napping. More soon.

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.

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

Meet
"Portia"
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 though...it'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.

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.

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!

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.

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 now....in 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 ado....here it is!

JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE JOKE

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.

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 tonight...how cool would that be?

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?!

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.

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).