I kind of feel like garbage today.
I started a new chemo cocktail yesterday because my old one poisoned my lungs. There are two well-known Hodgkin’s treatments – ABVD, which I was taking before, and BEACOPP. Now I am on a cocktail of the two cocktails – COPP/ABV. It’s bananas.
So many new drugs, a whole new schedule. Sometimes I have to take a pill on Thursdays and not lie down for half an hour after, or just a pill on Saturday and Sundays. My chemo treatments are now one week, then three weeks apart. So in a 30-day cycle, on days 1 & 8. But I also have to take a chemo pill every day for the first seven days of that cycle. So I guess it’s kind of like I’m getting chemo for 8 days in a row, then three weeks off.
I got two new-to-me drugs through IV at the hospital yesterday, hence my garbage-like state. I’m both curious and nervous to see how this new regimen goes. The side effects are mostly the same except on one of these new ones I have to make sure to use the washroom every 3-4 hours. Apparently a lot of the chemicals are released through urine and can be toxic to your bladder if they sit in there for too long.
You have no idea how ridiculous I felt waking up to an alarm at 3am just to release the chemicals from my bladder.
In other news, I was taken off my blood thinners (YAY!!). So that is one less needle I have to stick myself with a day. Now I’m just on the Neupogen shots for my white blood cells. There will now be days where I don’t have to give myself a needle at all, which is pretty damn awesome.
I’ve got this little bag that I carry all my drugs in and it’s starting to burst. I can’t believe how many chemicals and pills it takes to kill cancer. I forget just how harsh some of these drugs are, until I look in the mirror and catch a glimpse of my bald spot. I hate badmouthing chemo because it is working for me and will cure me. But it’s scary to think of the healthy stuff it’s killing on top of all the cancer stuff. Not to mention, it makes me feel like crap.
Today is a Netflix kinda day.
I have learned a lot of lessons since being diagnosed with cancer four months ago. Things that some people don’t learn until they are several decades into life. There is one lesson however that I’ve come to realize I am having a hard time to learn and has to do with time.
You see, when I began chemotherapy three months ago, there was talk of the possibility of my not doing the whole six months of chemo. Hodgkins responds very well to chemo, as proved after my first treatment when all my cancer symptoms vanished immediately.
But after meeting with my oncologist last week, I learned that the mass in my chest was just too large to be blasted out so quickly. I’ll have to do the full six months, with an additional six weeks of radiation still up in the air.
So at this point, that is only three more months of chemo. Maybe several weeks of radiation. To people looking in on the outside, that probably seems totally doable. To me however, the person who has to deal with the effects of these treatments and cancer every minute of my life, it’s an eternity.
I was talking about this with my dad, who was trying to convince me that in the grand scheme of things, being out of commission for 8 or so months of my life with this cancer thing isn’t that long. In my mind I started trying to do the math on what percentage 8 months of my 25 years is, compared to 8 months of his 57 years. I couldn’t come up with an answer, apart from the fact that it’s a lot longer duration for someone my age compared to someone his age.
My point being is that cancer will make a person grow up a lot, but there are some things that I can only learn with time. More specifically in this case, how to deal with time itself.
I would have never previously labelled myself as an impatient person. In fact, my rare patience is something I valued. But these days, as each treatment, each day, each minute spent being sick drags on, I feel my patience being tested. Time is always looming over me, whether it be the day I’m declared cancer-free, or the day I’m told the cancer has come back. Neither of which of course can be revealed until due time.
These days when I get upset and frustrated over what is happening, it’s not the “why me?” it used to be. It’s the “I want this to be over NOW” foot-stamping temper tantrums. I am so ready for this to be over, but time just isn’t moving fast enough for me.
As I feel worse with each passing day, the following day stretches out into something that feels longer. Three months can pass in a flash when you’re having fun, but it slows to a snail’s pace when you’re grasping to find the energy just to get through it.
I know this is an honest and perhaps depressing post for a Monday, but it’s a very real reflection of something not only I as a cancer patient struggle with, but I think anyone who is sick or injured struggles with.
If anything, let it be a reminder that not everything is “over before you know it.” Because living through some things often gets very real, very gruelling, and very hard. That is assuming of course it is ever over. My cancer may come back. I still can’t straighten my injured left arm. And apparently, I’m still not very good at mental math.
Hi friends! Thank you for being so gracious and supportive as I took a few days off from blogging. Most days I’m really happy to have blogging as a hobby and a way to keep me busy and sharp while on sick leave. However, on days when I actually do feel really, really sick, it’s hard to find the energy to post. As chemo drags on and I feel progressively worse, don’t be surprised if I take more days off here and there.
Even though I still feel shitty today, I wanted to give an update as to what is going on with me and this cancer thing. Last you heard, my temperature was a little high on Monday and I was experiencing a dry cough. Well, as the day went on, I started to get short of breath. Thankfully, I was scheduled to see my oncologist anyway on Tuesday, and he got right on it.
After a chest x-ray, pulmonary function test, and a detailed CT scan of my lungs, my oncologist was able to find that I’m experiencing decreased lung function and inflammation on my lungs. In other words, I’m positive for drug induced lung toxicity. It’s no joke.
One of my chemo drugs, Bleomycin, which is the “B” in my ABVD Hodgkins cocktail, is known for basically poisoning the lungs. It can cause inflammation and scarring on the lungs that reduces the amount of air I take in and oxygen I absorb. It happens to about 18% of people taking my chemo cocktail, and can be fatal if not addressed right away.
Thankfully my oncologist says it looks like we caught it early. The damage can be permanent, but he has high hopes mine will be reversible. I’m starting on Prednisone (steroids) right away to help reduce the inflammation and the coughing. I didn’t end up getting chemo this week, but will likely not be taking the Bleomycin with my chemo next week. From what I’ve read, Bleomycin is the most effective in the first three months of treatment anyways, so hopefully taking me off of it won’t affect how successful the chemo is at killing the cancer. I’ll also be seeing a respiratory therapist once a week.
I am pretty bummed about this new development. For one, I can’t get off the couch without gasping for air. I wake up in the middle of the night with coughing fits that just won’t end. Even though it’s been two weeks since my last chemo, I’m still exhausted because my body isn’t taking in enough oxygen. Don’t get me started on having to take Prednisone. I’m guaranteed a 20 lb weight gain as a side effect of that one. My moods will change, and it will put my bones at risk of breaking.
I’m at least secretly happy that I have this extra week of being chemo-free to allow my body to recover more before I tackle my next six treatments. I thought hitting the halfway mark would be a great milestone, but it’s definitely more of a reminder of just how long and gruelling this experience is. I knew I would hit bumps along the way, but that still doesn’t make the bumps any easier. I just have to buckle down, sharpen my focus, and know that there is a light at the end of this tunnel.