When I first got admitted to hospital, I got my family to buy me a journal so I could document everything that was going on. Even though part of me wants to forget all of this ordeal when it’s over, another part of me knows I will want to be able to go back and remember the little details.
Problem is, writing is hard! Not the process of putting thoughts into words, that is easy. But physically picking up a pen and writing out letters is a slow process, and my hand cramps after five minutes.
I am truly a member of the computer generation.
After about a week, I moved to typing all my thoughts and experiences into WordPress and not publishing. That way, if I do feel like sharing one particular story, it will be easy to put up.
Well today I am going to share a piece I wrote in that original journal. It’s a little short because, as mentioned, my hand cramped up and I couldn’t get the words on paper fast enough before the inspiration left my head.
It’s not funny, or witty, or inspiring. But it’s something I think about and go back to a lot…
The Moncton Hospital is made up of seven floors. Each floor has its designation and purpose. Instead of saying “Maternity,” often people will just say “the second floor” and know what area is being referred to.
The sixth floor is the oncology ward. Everyone knows it’s where the cancer patients go.
Even though I’m 25, people my age often go to the Pediatrics ward. There aren’t very many people in their twenties who require long-term care, so it’s easier to stick them in with the youngins’. We’re a little more active than those who take up many of the other beds anyways. But the kid’s ward is hectic, and busy, and I hear the nurses there are a little more harried. So my family doctor requested I be put in onocology.
It is mostly elderly people on the sixth floor. They’re quiet, apart from when their obnoxious middle-aged children come in to visit. The elderly actually like the food at the hospital, and they all look dead when they sleep. I chat with the other patients up here, but it is never a friendly chat. Everyone is engrossed by their own illness and problems.
Some of the lighter characters I’ve met in the hospital are the porters, those designated to wheel patients around to appointments and tests. The small talk with the porters is always a breath of fresh air after the depressing talk that happens in the oncology ward.
The other day, a porter was taking me back upstairs after a round of tests. He expertly turned my stretcher into the elevator and pushed 6.
“What the hell are you doing on the sixth floor anyways?” he asked.
I thought about it. This is where I would crack a joke or just tell the truth. But really, I didn’t have an answer for him. Because I don’t know why I’m up here. 25-year-olds aren’t supposed to get cancer. And I don’t belong here.
Things are happening over here! Well, kind of. I’m still hurrying up to wait here at the hospital, but at least the components have been put into motion.
Let me explain. In list form, it’s my favourite way. Lots of text ahead. If the details don’t interest you, feel free to skim.
1. After getting my diagnosis on Tuesday, I met with my oncologist on Wednesday. A really smart guy who I quite literally trust with my life. An important quality in an oncologist. He reiterated my diagnosis – Stage 2 Hodgkins Lymphoma.
What that means, is that it’s cancer in my lymphatic system in two or more areas of my body (chest, bottom of throat, under arms), but isolated above my pancreas. There are subtypes of Hodgkins but I don’t know what I am. My oncologist did describe there being “desirable” and “non-desirable” types in terms of treatment, and mine is the latter. That’s because I have a cancerous mass taking up more than one-third of my chest, so it’s slightly more aggressive.
2. Treatment for Hodgkins is pretty standard across the board, and mine will be no different – ABVD chemotherapy to shrink the tumour, followed by radiation to completely zap it. ABVD just refers to the initials of each chemical that I will be injected with. Because of the size of the mass, I will get a slightly larger dose.
3. Apparently there have been a couple recent studies showing that Hodgkins is responsive to fewer doses of chemotherapy, reducing the chances of long term side effects in younger people. Because of this, my oncologist hasn’t set out a long term chemotherapy plan for me yet. I’ll start with 4 chemo sessions every other week, for a total of eight weeks. From there I will have a PET scan which will show how the cancer is responding to treatment, and we’ll determine if I’m good for four or eight more weeks after that.
4. Chemotherapy, for those who don’t know, just involves me sitting in a chair hooked up to an IV filled with the drugs for a few hours. This is the part that actually scares me the most right now, because I won’t have a PICC line inserted to give direct access to my veins. An IV is supposed to burn going in!
5. On top of the chemo, I will also be taking anti-nausea medication (he mentioned Zofran) and an injection to keep my white blood cell count up (and in turn, my immune system). The injection could be every day, or once a week, and I’ll have to give it to myself.
6. The side effects are pretty standard:
- Thinning of the hair, which will probably start within weeks of beginning treatment
- Numbness or tingling in my fingers and toes
- Metallic taste in my mouth
- Weakened immune system
- Early menopause/infertility
- Lung poisoning
- Heart disease
I’m probably missing some. The first few side-effects will either be a breeze or awful. I’ll take that as it comes. My oncologist is at least taking the last few side-effects very seriously, especially because I’m young and have to live with the risk of long term side effects for a long time.
Because of the weakened immune system, I’ll be at a higher risk for infections. This is very serious, because I’ll be in a state where even a small infection could kill me. Also, I’ll have to keep an eye on my lungs (coughing, shortness of breath) and may get regular pulmonary function tests.
7. I won’t have any food restrictions!! So long as my immune system stays okay, otherwise further down the road I may have to stay away from fruits and vegetables because of bacteria/pesticides.
8. I didn’t quite understand this before, but I understand it now – the cancer is putting me at a risk for blood clots because it is growing and squeezing the veins in my upper body. The blood thinners make it so my blood is thin enough to still make it through the veins without clotting.
9. The risk of clotting is why I’m not getting a PICC line right away. It’s also why I’m still in hospital and everyone wants to keep a close eye on me. It’s actually the scariest part of this whole thing. I didn’t get it before, but I sure as hell get it now – blood clots are no joke!
10. I’m still being treated for clots with a blood thinner (heparin) through an IV. The doctors don’t know how long I will be on this until my cancer gets small enough to safely take me off of it. The more popular oral blood thinner, Coumadin, apparently doesn’t react well with chemo and is not an option. When I eventually, if ever, get released, I will have to give myself injections of lower dose blood thinners into my stomach until I’m in the clear.
11. There’s been talk of keeping me in hospital for an additional 2-4 weeks. At least for my first chemo treatment to see how I react, and possibly for my second (what would be considered my first “round” of chemo – I know, it’s confusing). They also want to make sure I’m at a lower risk of clotting before they set me free.
Aaaaand I think that is it! Hopefully all that information didn’t put you to sleep. A lot of people have been asking for specifics so it’s nice to finally be able to give them. Like I said, I’m meeting with a radiologist in the next couple days who will make her recommendations for radiology, which will also influence the chemotherapy some. I honestly still don’t know much about radiology, so it will be nice to know what to expect from that. Some people react worse to the side effects of radiology than chemotherapy. Thankfully, I won’t have to worry about that for a few more months!
If you have any questions or want clarifications, ask away. I’ll answer what I can. As much as this next step scares me (and believe me, I’m no warrior, I’m really friggin’ scared) I’m happy to at least be moving in the right direction. Making decisions and taking steps that will work toward getting this cancer out of me.
Oh, and meeting with the radiologist means another trip to another hospital within the city! A brief escape!
Tomorrow’s post will have less words, more pictures, promise.
I didn’t want to blog about this until everything was for sure for sure. But then, my blog is my outlet and I want to update all my friends with this news, so what the hey. If you’re reading, you’re on this this roller coaster with me. So if things change, they change.
As most of you know, I have been in the hospital for exactly three weeks now. I came in with a blood clot, which turned out to be caused by a large mass in my chest, and I haven’t been able to leave since (minus that one road trip to an out of town hospital).
From the beginning, all the doctors knew it was lymphoma. I’m not a doctor, so I can’t tell you how they knew this. But I suspect the CT scan was in line with how cancerous lymph nodes are expected to grow in the chest.
It was my family doctor who told me and my parents the news that night three weeks ago. The same one who treated me as a baby. He sat next to me and touched the centre of my chest, “The scan showed a large mass in your chest.”
I was immediately transported to another world. When people hear “cancer” they automatically think “death.” But that’s not where my mind went in that moment. I just knew that my current life as I knew it was over. I was now living the life of someone else.
My family doctor described lymphoma as two types – Hodgkins and non-Hodgkins. The former being the very treatable kind with an almost 98% survival rate (a term I hate, “success rate” is better). The other kind, well, we’d come to that hurdle when and if we needed to. It gave me a glimmer of hope. Something to hold on to in an otherwise new, unknown, bizarro universe.
I had a needle biopsy on my chest the following day. A biopsy by the way is not just a long needle. It’s more like jabbing, sometimes a little drilling, and very unnerving to see go into the caverns of your body. Days later I found out that it didn’t result in enough “good” cells to make a proper diagnosis of lymphoma type. It was still yet to be determined if I had the good cancer, or the not-so-good cancer.
The next course of action was to put a scope into the base of my throat and grab larger chunks of the tumour in my chest. A more invasive procedure that required anaesthesia and a longer recovery time. I anxiously awaited diagnosis for a few more days. Further tests showed by stomach, pelvis, brain, heart, and bone marrow were all clear. Happy days! But then I was once again told they didn’t get enough good cells to make a diagnosis. Very unhappy day.
For the third try, the doctors decided to go in and get a cancerous lymph node in my right armpit. This was the final attempt before doing the unthinkable – going into my chest and grabbing a piece of the tumour where it’s most active – around the main vein that goes into my heart.
The lymph node surgery was last Friday. They removed just one lymph node the size of a large marble. Or rather, a bouncy ball (that reference is for my co-workers). Everyone said it had to result in a diagnosis. No way a lymph node that size wouldn’t. I thought they were being falsely positive at this point. Call it a faulty personality trait, but I never try to set myself up for disappointment.
To make a long story longer, I got my diagnosis. Three long weeks of wondering if it’s that treatable kind or scarier kind my doctor talked about on that first night.
The pathologist still has to sign off on the report, and I still don’t know what kind of chemo I’m getting, but I still have to share this news. It’s Hodgkins.
That means I can start chemo in the next couple of days and start actively working towards getting rid of this disease. I will share the information on chemo once I know it. Unfortunately this does not mean I am getting out of the hospital right away. In fact, I could be here for a few more weeks. But I won’t get into that right now.
Really, I just want to say thank you for your prayers, your good vibes, well wishes, emails, gifts, and spirit dances. I feel like this is the one hurdle of many, and I just cleared it. Now it’s time to keep running forward and I’ll keep flying over those hurdles as they come.