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.