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!
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!
…and I am CANCER FREE!
After finishing my scan on Monday, the doctor came out and asked me when I finished chemo. I replied “December 21st” and he said “Oh! Right before Christmas!” I nodded, remembering how uneventful it seemed being sick over the holidays and worrying if maybe the chemo wasn’t enough.
The doctor then said he looked at the scan and that “it looks like it’s all cleared up.”
I said “Really!? That’s awesome!” And then the doctor wished me luck and returned to his office.
The technician walked me to the waiting room where my dad was. She said the doctor rarely comes out and tells patients the results of a scan before giving his report to the oncologists.
I immediately told my dad the good news, we hugged. I then visited my Grammie who is staying in the same hospital, and ran into my older sister who gave me a cinnamon bun the size of my head.
Despite knowing that my scan was clear, I still had a lot of questions for my oncologist. Unfortunately, when I saw him on Tuesday he hadn’t received the PET scan report yet, so I had to wait for any more details.
I spoke with my oncologist over the phone early yesterday and he confirmed that the PET scan showed no metabolic activity. That means NO CANCER (*fist pumps*).
However, there is still a “residual mass” in my chest. This is a very common occurrence for Hodgkin’s Lymphoma patients, especially those with bulky tumours such as my own (bulky means it’s larger than 10 cm in size. Mine was 14 cm, or 5.5 inches). Because the residual mass did not light up on the PET scan, it is not cancerous and not growing. My oncologist is fairly certain it’s scar tissue, and from what I’ve read, having a residual mass won’t necessarily increase my risk of recurrence.
Now there is the big question as to whether or not I’ll do radiation to further shrink that residual mass and zap the area that was once active. In the past, 6 months chemo + 1 month radiation was the norm for people with my diagnosis. However, the most recent studies have shown that radiation may not prevent Hodgkin’s from coming back any more than just having chemo. Radiation also increases the risk of getting a secondary cancer down the road. Something of particular concern because of my younger age.
My oncologist recommended that I don’t do radiation, but he’s leaving it to my radiologist to make a formal recommendation. The decision to get it is ultimately mine, but I trust my doctors and will likely do what they say. I do know that my oncologist is highly respected so there’s a good chance my radiologist will follow his recommendation, unless she isn’t as satisfied with my scan. I’m not sure how large the residual mass is yet.
I meet with the radiologist on Friday, so I will update you all on the radiation bit after then!
As of right now, my feelings are mixed. I’m elated to know that I no longer have a cancer inside of me, and that I can get my horrendous PICC line out!
On the other hand, I am nervous about this radiation thing. I am nervous to start living my life dealing with the long-term side effects of cancer and its treatment. The cancer may come back, my lungs still feel off, the chemo can affect my heart, gall bladder, the list goes on and on.
Just because the cancer is gone, it does not mean the complications and emotions that come with it are suddenly gone too. I am definitely happy I was able to get rid of my cancer, but I much prefer to have never had cancer at all.
In the end, I do realize I’m lucky to have gotten rid of it at all. There are many out there who are diagnosed with less favourable kinds of cancer. But I am not fooling myself into thinking I will ever be the same again. I unfortunately learned the hard way that I’m not as invincible as I once thought I was.
I have a lot to say, but I will leave it there for today. However I can’t forget to give a big THANK YOU for sending so many well wishes, good vibes, prayers, and healing chants. Those of you who sent comments, messages, and tweets over the past few days, I am sorry I couldn’t respond to every single one of you. But please know I read and appreciated every single one. Also, thank you to the silent readers who also sent positive energy my way. I am not too hippie-dippie when it comes to this stuff, but I will take anything I can get if it will help keep the cancer away!
There is certainly still more to my cancer journey, but I’m sure we can all agree that the worst is now hopefully over.