The Great Balancing Act

*peeks head in*

*sheepishly waves*

Is anyone still out there?

I have been meaning to write this blog post for months now. When I took my blogging hiatus, I had no idea how long it would last. Checking in with an update has been on my to-do list since the last time I hit “publish,” but I didn’t want my return to feel forced. Thus I waited until I felt ready to put some things into words. So here I lay in bed with my little Buster Pie curled next to me, staring at the WordPress screen once again.

First, let’s talk about my health.

I haven’t had any scans or oncology appointments since the last time we spoke, so as far as I know, the cancer is still gone. I do have a scan in June so let’s cross our fingers everything will be fine by then! That 98% survival rate you hear so often with Hodgkin’s is only after five years of being cancer-free. There is a much higher chance of recurrence during that first five-year window following treatment. So that is something I worry about with basically every waking second. I think it’s starting to give me wrinkles.

I wish I could say I am feeling wonderful and grabbing life by the horns, but well, some chemo side effects are still with me four months later, and they still suck.

First, there is chemo brain. Sometimes I feel like it’s worse than it was while actually on chemo, but perhaps it’s just more noticeable because I have to use my brain more being out in the real world. Not only am I generally confused and have difficulty communicating, but I seem to be losing chunks of time. Large periods of my life completely disappear into the abyss that is now my malfunctioning brain. I used to be so sharp! Now I rely on my iPhone alerts and endless lists to get me through the day. On the bright side, I have finally turned into that incredibly organized woman I’ve always wanted to be. Unfortunately out of necessity.

Fatigue! Oh what an enigma chemo fatigue can be. My energy levels are indeed coming back, but I am having a hard time judging exactly when my new found energy will run out. I’m just going along, doing my thing, and then CRASH. While I do have more energy these days, when the fatigue hits, it’s still mighty crippling. I feel like there’s no predicting it, so I just keep chugging along and take time outs when I need to.

Hair. It is growing so slowly! I thought by now I’d have a cute little Michelle Williams pixie cut but it’s still a borderline buzz cut. I gave up the wig a couple weeks ago because I finally got to the point where having the wig on my head at all hours was worse than looking like a boy in lipstick. I hate the way my hair looks and generally don’t look in the mirror much or pose for pictures anymore. I have no desire to remember ever looking like this, and thanks to chemo brain, I probably won’t.

Apart from chemo side effects and worrying about cancer all the time, life is good. I love being back at work and knowing I have something to do every day. I moved into a HOUSE! A cute little two bedroom, 1-1/2 storey rental house slightly off the beaten path. It’s the perfect home for me, Buster, and my sister. Decorating the house has been a nice distraction during this period of life. It is probably the girliest house you have ever seen.

I have done a complete 180 with my eating habits since finishing chemo. I am trying really hard to eat the best I can to help keep me healthy, which means less adventures in the kitchen. No more trays of sweets or rich foods made with packaged products. Trying to do the ‘au naturel’ thing, which has also translated into all other products I use, including makeup and cleaning products. Except I haven’t given up beer and whiskey. A girl’s gotta have some fun too.

Finally, I am going to Colorado next week!! I leave for the Blend Retreat on Thursday and I am both terrified and ridiculously excited. Travelling alone with chemo brain is a little disconcerting, and I’m scared I won’t be able to keep up with the rest of the gang. But it’s all worth it to be in the mountains with friends.

Soooo… does this mean a comeback? I am still not sure. To be perfectly honest, it is really hard to come back to this blog when there is so much of my history in it. In some ways, it is almost creepy how the cancer car wreck happened on the internet for the whole world to see. At this juncture, I am very ready to move forward from both my cancer self, and my pre-cancer self. And coming back to write here is just not in line with that. So we shall see. A new blog may be in order. I really want to start writing again, but felt the need to test the waters first. Dip my toes in to see how cold the water is. It may take my body some time to adjust, so thank you for bearing with me on the sidelines! I appreciate it more than you know.

Buster moonlights as my copy editor.

P.S. I am still avoiding my inbox and not answering emails. Sorry I’m not sorry.

After finding out I had cancer last summer, a lot of people told me that getting through treatment, while physically challenging, was actually the easy part. Many former cancer patients informed me that the hard part came after treatment. When there is no more end goal in mind and medical schedule to focus on. But rather, being thrust back into the real world after having just gone through a traumatic ordeal, and pretending like you’re happy to be back at it.

It wasn’t my intention to disappear from the blog for a couple weeks. But these days, writing is a lot more forced. The only reason to update was for all of you reading out there, and I felt I had little to benefit from it.

That’s not to say there’s been nothing to blog about. I’m still in the kitchen cooking up a storm and experimenting with new recipes. I’ve even made up a few of my own. I got my first infection since starting chemo – a tooth infection. I’m on penicillin right now and the excruciating pain in my lower-right wisdom tooth has thankfully subsided. I’m getting my wisdom teeth out next month. I would have done it sooner, but you’re not allowed to go to the dentist when on chemo.

I’ve heard from a lot of fellow cancer patients and their caretakers. People who have gone through the crazy roller coaster ride that is cancer. We share war stories and tell each other we’re doing the best we can. It helps, a lot. And keeps me coming back to blog in case I can reach another fellow patient out there.

Many months back, I said it was hard to go through an illness under a microscope, and I stand by that. Although I was quite vocal about my experience both on the blog and with the local media, I really just did it because I wanted people to know that cancer is not a death sentence. No matter what it looked like from the outside, I was not a poor sickly bald girl to look down upon. I was living with cancer, with my personality and sense of humour intact. Cancer takes a lot of things, but it doesn’t take away a person’s spirit.

As time goes on, I find myself wanting more and more privacy. I am still trying to deal with what I went through, and I just can’t yet bring myself to share it with such a large audience. I really don’t think there is a right or wrong way to go through cancer. But I also can’t sit here and blog about cookies and cupcakes like nothing ever happened.

The past two weeks since finding out that I am done with treatment have been both fantastic and terrifying. I was a rock while going through treatment and hardly ever shed a tear. Now I’m kind of an emotional mess and find myself getting set off by the slightest things. It’s like my body was in ‘fight mode’ for seven months and only now can I loosen my grip and take off the brave face I was putting on.

I’m writing this because I didn’t just want to disappear without an explanation. Despite the hardships, there are good things happening too. I’m going back to work. Eight hours a day, five days a week. It’s going to take every ounce of energy I have for a while. When I do find energy between working hours, I don’t want to spend it doing more typing at a computer. I want to be putting in face time with other people, reading books, knitting, or cooking. In my list of life priorities, blogging unfortunately has fallen to the bottom.

This is by no means a ‘goodbye forever’ post, but a ‘see you soon.’ See you when I get a better handle on things or if I have something in particular to share. If you don’t want to have to constantly check back, I encourage you to sign up for email subscription at the top of the page. That way when I post again it will go straight to your inbox. You can also RSS or join my Facebook page where I put up posts. I’m still on Twitter all the time and posting a gross amount of pictures of Buster on Instagram (as BalanceSusan).

So… see you soon. And don’t do anything I wouldn’t do!

I last left you guys with news that I am cancer-free. Probably the best news a person who previously had cancer could ever get. However, I was still uneasy as I had yet to meet with my radiologist and hear if she wanted to continue treatment with several weeks of radiation. It would involve me going to the hospital 5 days a week and getting zapped in the chest. Apart from being inconvenient, radiation also carries a high risk of causing a secondary cancers down the road. For some people the side effects can also be worse than chemo.

Well the good news just keeps on coming, because the radiologist said she did not want to do radiation!! She said even though I have a residual mass in my chest, there is no sense in radiating it because they know from the PET scan it is not active cancer. Thank goodness for PET scans! She also expressed concern about the radiation field, which would have to go through both breast and lung tissue, putting me and a very high risk for breast cancer and more lung issues in the future.

The radiologist printed out a copy of my PET scans to compare “before and after.” The images are of my chest with my arms above my head. Top was done on June 30, 2011 before my diagnosis, and the bottom image is from last week, January 30, 2012.

On first glance, there’s a clear difference between the two! On the computer, PET scans are in colour and show a better distinction between tumours and organs. You can kind of see on the top image where the radiologist circled to show me where the original mass was. The lighter bits inside of it are the parts that “light up” as being actively cancerous. The other white bits are just bone. It’s a 2D snapshot of a 3D image.

Below is another angle, showing a snapshot as if you were looking through my torso from my feet. Again, consider it a 2D slide in a 3D image.

You can see in the bottom image where the radiologist circled as being the residual mass, which is 2cm. That’s down from a 14cm mass! She said I shouldn’t spend too much time worrying about the residual mass becoming cancer again, and that it will take my body a couple years to absorb the dead cells it’s made up of.

I’m going in for another PET scan in about 3-4 months just to make sure there’s no new growth since ending treatment. After my radiology appointment, my mom and I immediately went to extramural to get my PICC line taken out!

I had this purple tube inside my arm for over four months. It’s inserted into a vein in my arm and goes all the way to my heart. It protected my veins while getting harsh chemo treatments through IV and also made it so I had less needles for my weekly blood draws. However, it also had to be cleaned every week, taped to my arm 24/7, and I could never get it wet. The PICC was a constant reminder that I was a sick person with ties to the hospital. Getting it taken out was like being unchained from cancer!

Getting the PICC inserted was the most traumatic experience, apart from my bone marrow biopsy. It took 90 minutes to shove in, and under 30 seconds to pull out. Go figure.

By chance, a few of my friends planned a get together for Friday night so we turned into a cancer-free/end-of-treatment celebration. They made me cupcakes!

Tiffany is a genius.

 And bought me beer!

As promised, I indulged in many drinks, went out to a bar, and stumbled home close to 3am.

It is SO incredibly weird to think that I am completely finished with treatment. I still feel the effects of chemo every day. I sleep a good 9-10 hours every night and my brain is still pretty foggy. I still wear a wig as my hair is only half an inch long.

You could probably tell from my last post that I was having a hard time grasping with the idea that I am cancer-free. I think that’s because I was still struggling with knowing I even have cancer in the first place. But treatment? That affects me immediately in a very real and tangible way. Finding out that I’m finished was the best moment of my life. I am tearing up now just thinking that I can start to put some space between me and this cancer debacle.

As for the for the immediate future, I am going back to work in two weeks. My bosses and coworkers have been amazing throughout all of this and my desk is still there waiting for me. I’m definitely nervous about getting tired being in the office for eight hours (and being there for 8am!). But, I’m lucky it’s a pretty non-physical, non-stressful job. I’m confident that even if it’s rough in the beginning, I’ll get the hang of it quickly.

I also have long-term plans of leaving the nest and getting a place of my own. I have had to give up A LOT of independence while getting treated for cancer, and I am really looking forward to getting some of it back.

Again, thank you so much for the continued support from each and every one of you throughout this entire experience. Being able to connect with people through my blog kept me from feeling isolated when I was too sick to leave bed. You were all a constant source of strength and hope. It takes a village to raise a child, and apparently it takes an army of friends via the internet to get rid of cancer!