It’s been a couple of weeks since my last update. Things got busy, and I got tired.
Pandra and I simultaneously caught a cold. It was just a cold, though. We’re still both getting over it. Adam also caught some kind of bug, although it seems slightly different from the cold Pan and I have. He’s just starting to feel better. And now Lyra’s catching it, because we should never all be reasonably healthy at once.
The mid-treatment PET scan
Early in January I had a scheduled PET scan to show the progress of my treatments and how the tumors are reacting. And then my doctor was a way for a week, and I didn’t actually see her again until January 24th, so I didn’t get to hear the results for weeks. This didn’t really bother me very much, but the rest of my family was impatient and kept asking about the results. At one point I had to promise them I wasn’t trying to hide anything from them… I just didn’t have anything to tell them.
At the Oncologist appointment, she told me that the tumors were resolved — especially the two smaller ones, and probably the largest as well. It was pretty much the best possible news we could get, and everyone was thrilled to hear it. Except I didn’t really feel much about it either way. I was happy, but I didn’t really feel like celebrating or anything yet. In my mind, of course the chemo was working, and of course the PET scan would show as much. It was odd to not feel happier about it. It still is.
Since the scan showed I had such a positive response to the chemo so far, the Oncologist told me that she would not extend my treatments to six instead of four. This made me happier. Four treatments meant I’d be done at the end of February. Six would have meant at the end of April or so. I’m very, very tired of chemotherapy.
But because the PET scan is considered a clinical trial, it is not the official tool to say that I am cancer-free. For that we need another CT Scan, which is scheduled for tomorrow (or today, depending on when you’re reading this). I get to drink a bottle of Readi-cat (Barium) and have my torso scanned in a tube. More fun with hospital machines that go PING! And so, in about a week, we may have a full ‘all-clear’ on the cancer front. But I still have one chemotherapy session left, the day after BC Family Day, to complete my treatments.
The Medi-port, anxiety, and me
My port installation finally got booked, and I went through some serious decision-making processes to figure out if it was worth going through with it. It was due to be put in one week before my second-last chemo treatment. When the nurse at my chemo session on the 14th told me the date, I asked her outright if I should go ahead with it. She didn’t say no, and she didn’t say yes, but she looked at my arms and said something like, “Well, I’m running out of veins in your arms…” and didn’t say anything else about it. So she left it up to me entirely, but it seemed to me that she thought I’d have a better time of chemo, even with only two sessions left, if I had a port.
The week that I had to make the decision was the week my Oncologist was away. I considered phoning to talk to one of the other doctors about it, but that set me on an anxiety loop that I couldn’t mentally handle right after chemo. I had phone anxiety coupled with talking to a doctor I didn’t know anxiety, and eventually defaulted to running out of time to make that call and ask their advice. By that point I had talked myself into getting the port for the most part anyway, but I felt like the anxiety had defeated me. Phones and anxiety shouldn’t make life so hard. Sometimes they do for me.
Port Installation Surgery Day!
So on Monday, January 20th, I went in for my port surgery at Royal Columbian Hospital. It was an early morning day-surgery, so I was at the hospital by 7:30am. A radiologist performs the installation, with local anesthetic and some mild sedatives. At least, they were pretty mild sedatives for me. I talked to the doctor the entire time he was working on me, asking what he was doing. He was pretty happy to explain it all to me in great detail, which I thought was awesome. The anesthetist kept asking me if I needed more sedatives — apparently I was far too coherent to be not freaking out about what was going on. She made me confirm that they were working at all (yes, they were), at least once.
I just think surgery is cool, and I wanted to know what was going on. By the end of the procedure, the radiologist doctor told me that he thought I’d probably enjoy performing it. I agreed, of course. Because surgery is neat.
I was picked up and home by twelve-thirty, so Adam and I went for lunch at the pub down the hill from our house. I was a bit sore and still recovering from the local freezing and the sedatives, but overall in good shape. I was back at work (albeit sore) as a cyborg by the next day. I am Jenutor of Borg. Resistance is futile. You will be assimilated.
So the port installation experience overall was a good one. I was uncomfortable and a bit sore for maybe five days at most. And then I got to go to chemo a week later and find out what the big deal was.
Chemotherapy with a port vs. without
My experience with chemo, specifically with the Dacarbazine, has been unpleasant. My veins are not what one calls ‘good’ veins. The first one they ever tried collapsed instantly. The nurses got in the habit of warming up my arms before chemo to see which veins popped up with the most potential. They administered the Red Devil (Doxorubicin) very, very slowly.
And then there was the Dacarbazine. It frequently burned my veins. The nurses would slow down the pump, and add more saline, and slow down the pump more, and wrap my arm in a heating pad, just to try and stop the burning. It often took two hours or more just for this one drug to get into my system. And after one treatment in my second month of chemo, my arm felt like it was burning for a week or more. It was not my favourite thing.
With the port in place, there was no struggle to find a vein. They just clean the port area, plug a needled thing in, and have a direct line into a much larger vein that’s closer to the heart. It was quick and there was only a mild sting, no different than any other needle. Needles and I are good friends these days.
The Dacarbazine through my new port took about an hour. Not 2+ hours. And I discovered something interesting. I had been leaving chemo treatments for months feeling thick and bloaty and like my face was puffed up and weird. I thought it was just a chemo thing, but after the port chemo experience vs. the non-port experience, I realized that those feelings came from all that extra saline they were using to dilute the Dacarbazine.
I love you, Port, and I wish that you had been installed when you were initially supposed to be, way back in that first month or so of treatment. If you are considering whether or not you should get a port, I am now strongly on the side of saying “yes, you should.” I may only have two chemo treatments with this thing in, but even that is worth it. So very worth it.
Coming up to the end of Chemotherapy
This past Monday was the first session of my final chemo cycle. That means I have one treatment left in this cycle, which means that two weeks from now I will be done chemo. I won’t be quite better yet; that won’t happen until the end of February or early March, once the last of the chemo drugs have had their way with me. And then, if all is as the PET scan suggests (and tomorrow’s CT will likely confirm) I will be officially cancer free. A report sent to my family doctor that I got to see this week had the term CR on it – Complete Response, or Complete Remission.
That doesn’t quite mean cured yet, though. Lymphomas do have a chance of recurring after they’ve been eradicated. So while I will be cancer free, I may not be officially considered cured for years. I’ll be going back to see my Oncologist regularly, and as time goes by the space between my appointments will get longer. It is unlikely that my cancer will relapse, though.
Maybe it hasn’t sunk in yet. Maybe it’s just hard to believe when I’m still feeling pretty craptastic from chemo itself. Maybe I’m just tired and ready to feel normal again. But I know that I’m close to the end of this part of my life, and it isn’t an overwhelming sense of joy or relief or …. well, anything, yet. It might take me a little while to catch up with everyone else’s excitement over my being cancer free.
Life is a bit different now. I am curious about what happens next, and how other things in my reality will be affected by this experience. Yes, that’s probably the best word for what I feel right now. Curious. And I’m ready to be done with chemo.