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!