PET Scans, ports, and nearing the end of treatment

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!

Medi-port installation
My port incisions. The bumpy bit below the lower incision is where the port resides under my skin. Cool, eh?

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.

I thought chemo would get easier as time went by. I thought wrong.

They changed my chemo appointment and I didn’t notice on my sheet, because I’ve become accustomed to it always falling on a Monday. This morning I went to the hospital as usual to get chemo, and they sent me back home. Naturally it was one of the few times Adam had taken the day off to spend with me… It was both a relief and frustrating.

Ongoing chemotherapy: It doesn’t get easier

After my first chemotherapy session, I thought that it would get easier to handle. I believed that the combination of knowing what to expect from a chemo session, actively working towards curing my cancer, and counting down the number of sessions before I’m done. All of this makes sense on a rational and logical level. But even I can’t be rational and logical all the time…

This keeps me going.
This keeps me going.

I’ve found that I start feeling anxious towards the end of my second week after chemo. As I start to feel more normal, my  energy levels come back up, and my brain starts working effectively again, a vague anxiety starts lurking in the back of my mind. I make an effort to ignore it as much as I can, but it creeps in nonetheless. Every time I have a few quiet minutes to myself, or when I’m lying awake in bed, or when I notice just how close to normal I’m feeling, I can feel the undercurrent of anxiety building up.

And the further into chemo I go, the worse that feeling gets. After a while it builds from anxiety into dread — I start actively thinking about how much I don’t want to go to chemo and how it’s going to make me feel crappy and tired and messed up again. And I start to think about how awful it would be to have to go through this whole process again (and have it be worse than it has been for me so far), or to watch someone close to me go through it.

In other words, I’m starting to feel the long-term psychological impacts of being a cancer patient. They are subtle, and you carry them with you, unseen. Lying in bed last night, I tried explaining it to Adam. He reminded me of the positives (only three sessions left, things are going well, I’m getting better), trying to reassure me as you do when someone is feeling anxious, but it’s more complicated than that.

I’m not just afraid of tomorrow’s chemo session. I know what that’s about, I know what’s coming. I don’t like how the chemo makes me feel stupid, and how it clouds my brain and makes me forget words, and the way I get shaky and tired, oh so very tired. But it’s the devil I know, and it’s not going to kill me — the cancer, on the other hand, would. And I expect that I will be cured when treatment is done, or if not, with the next course of treatment. My doctor’s confidence is high, and I believe her. She doesn’t stand for bullshit.

What I’m afraid of is the unknowable future. What if I get another cancer someday down the line? What if I have to go through a harsher treatment, or it’s something far more serious? What if my kids or husband are diagnosed? These things could all happen.

I don’t live my life expecting cancer around every corner (surprise!), but tied into the anxiety I get for a few days before my chemo session are these flash-panic-inducing, irrational fears. And while I am aware that if any of this happens then we will deal with it, that doesn’t make the tightness in my chest go away, and it doesn’t make the unsettled dreams that come when I finally do sleep the night before chemo any easier to handle.

But the panic passes when I remember to breathe. I go in for chemo and it’s not so bad, even if it sucks. People close to me count down to the final treatment on my behalf, since I don’t keep track. My life goes in two-week cycles, from chemo session to chemo session, over the hill and back down the other side. When the panic is gone, the anxiety remains, colouring my life in irritating ways — like making me think that friends are avoiding me (sometimes they are, just so they don’t make me sick), or that I’m completely incompetent at my job, or that no one wants to invite me to anything — amplifying my social and self-confidence anxieties on top of the cancer fears, just for giggles.

I like making lists

I’ve started keeping a list of the things I want to do when I’m done with my cancer treatment, to help me look ahead with a sense of purpose. While I can’t wait until I feel normal all the time instead of sick, stupid, and exhausted, that hasn’t been enough lately to keep me going. So far the things on the list are fairly mundane — record some music, take some guitar lessons, take a course in something I’m interested in (not sure how to afford that yet, or what to take), go biking, go running, get a dog, go to Disneyworld (when we’re not broke) — but I’m trying to think of more. I need to think of more.

My friend Steve, who went through chemo a couple of years ago for Non-hodgkins Lymphoma, sometimes talks about how the experience of the cancer patient really makes you feel like you need to leave a legacy. His legacy is mountain biking trails. Right now, mine is Lyra and Pandra. I don’t want to miss them growing up — the thought is physically painful. My list, though, isn’t about legacy. It’s about living. I don’t think that I wasn’t enjoying my life or living happily before cancer — because I was. But I was also putting some things off, or not giving them the attention I really meant to, out of laziness or lack of funds or variable priorities. So now when I think of the things I want to do during chemo but can’t for whatever reason, it goes on the list. When I remember to add it.

What’s on your list?

The year I nearly spent Christmas in the hospital…

Those two rough weeks I had just a little while back? They’ve been topped. Oh how they were topped.

Saturday, December 21st: The cold gets worse

I was having my usual low-energy-five-days-after-chemo sort of day, where I just wanted to sit around and do nothing much. My cough and cold I had picked up from the girls was pretty bad, so I mostly did exactly that, other than a short trip out to North Vancouver to buy a new backpack for Lyra and pick up Adam’s brother to bring back to our place for a visit. Even that seemed like it was pushing it, though, so we went home and relaxed for the night.

I felt worse as the evening progressed. My cold hadn’t been getting better — I had been coughing so hard my stomach muscles were killing me. But the doctor had told me on Monday to take anything I needed to for the cold. I took some NyQuil and went to bed, hoping I would feel better.

The first time I woke up was because I felt off. As I lay in bed listening to my body, it suddenly told me that it wanted to remove all traces of sushi dinner from my stomach, via the route it entered. I obeyed, and spent some time in the washroom throwing up into the toilet. It was unpleasant.

And then I started wondering if I had a fever, but was too out of it from NyQuil haze to really keep that thought in my head. I crawled back into bed with Adam, and went back to sleep for a little while. At least until I woke up again with the feeling of needing to puke again. So I did. And also had some diarrhea. It was even more unpleasant than earlier.

Adam took my temperature and confirmed that I did, in fact, have a fever. I curled up on the couch and coughed a lot and felt generally terrible, occasionally puking into a bowl. Adam phoned the Oncologist’s pager to find out if he should take me to emergency, and I guess she could hear me coughing in the background and I did not sound great. She said yes, and told him that the hospital near our house (Eagle Ridge Hospital) would be fine to take me to. We weren’t sure, because they don’t have a cancer unit there so they don’t necessarily have experience dealing with cancer patient care in emergency, but she said if they had questions they could call her.

I threw up at least one more time, had some more liquified poop fun times, and discovered that my period had started. Fun. I changed into the most comfortable clothes I could find with the expectation of staying in hospital for who knew how long, we woke Jordy up, told him he was in charge of the children until further notice, and Adam whisked me off to Eagle Ridge Hospital (one block away), where the ER was almost empty.

I felt terrible. Beyond worse than I can remember ever feeling. Absolutely at my lowest, and fighting some vague despair that had me wondering how people could keep the will to move forward through feeling so bad. I went away mentally for a while so I wouldn’t have to deal with the despair. It was the lowest of my low points.

I registered with the ER admissions nurse in a combined haze of NyQuil and feeling the worst I have perhaps ever felt in my life. Adam gave them my Bleomycin lung damage card (the one that says I can’t get Oxygen therapy because I’ve had to take Bleomycin for chemo) and showed it to every subsequent nurse or doctor who had anything to do with my care. I’m glad he was attentive, because I was not particularly. I remember thinking, and possibly articulating to Adam, that I felt worse than I had ever felt in my entire life, and I did not like it. Not one bit.

I got moved into a room in the ER, and IV’d up. They sent me off for chest x-rays and then installed me into a very small room in the ER. I drifted in and out of coherence throughout the whole thing, and was thankful not to be throwing up any more. At one point the doctor treating me said he was going to put me on an antibiotic and left the room to get it set up. He poked his head back through the door after a minute, saying “I’m going to put you on a different antibiotic because I looked one up that’s specifically for chemo patients, so that’s what I’m going to put you on, and you really don’t care what antibiotic I put you on do you?” I half-grinned at him and said “Nope, whatever you like”.

Adam updated Facebook with a message to let people know what was happening with me:

I’m starting to dislike feeling so at home in hospitals. Two trips to Eagle Ridge ER in one week for two different family members will attest to that.

Jenny spiked a fever and immediately started throwing up last night (serious stuff when chemotherapy is involved and the immune system is suppressed), right on the day of the lowest point in her chemo cycle. A quick call to her oncologist at 3am confirmed she was to report to the closest hospital ER immediately. Lucky for us Jordy was staying with us so I was able to leave him with the kids. I hadn’t slept all night as it was so was awake and pretty much ready to go.

4 hours later we’ve had a barrage of blood tests, an IV of antibiotics and she is finally asleep. I’ve snuck out of the room for a quick breather

Mission to stop the cold that ravaged my kids over the past three weeks from reaching my wife: Failed.

So far, not fond of Christmas this year. All I really want for Christmas is a return to some sense of normalcy, and about 3 weeks sleep.

This ceiling is starting to look too familiar.

I stayed in that little room with saline and antibiotics pumping in to me, drifting in and out of a very restless sleep while time stood still. They brought me a breakfast that I chose not to eat, because puking sucks and I didn’t trust myself not to do so. Adam sat with me and worried, I assume, but I think he felt better that I was at the hospital than if I was at home being sick. He didn’t sleep, and hadn’t slept much before we went in to Emergency. At some point a friend came to the hospital and sat with me in the tiny ER room, sending Adam home to get some sleep. He needed it.

They came to tell me they were going to move me up to a room in the hospital ward upstairs, and that they didn’t know how long I would have to stay. I didn’t like not knowing how long I’d be stuck in the hospital, and continued feeling pretty terrible. There were no windows in the ER, so I had no concept of time. I woke up sometimes and chatted with my friend Susan, but I wasn’t feeling particularly conversational, and kept falling asleep.

Sunday, December 22nd: My very own hospital room

Eleven hours after arriving at Emergency, they finally moved me upstairs to a room. I had seen at least two doctors who didn’t know what was wrong with me, had a couple of vials of blood taken for tests, and had no real answers about anything. But I was glad to be moving into a quieter, private space. It was 2pm.

This is Lyra's Dragon Hookfang. She thought he would keep me company while at the hospital.
This is Lyra’s Dragon Hookfang. She thought he would keep me company while at the hospital.

Susan was still with me when I moved, and let Adam know where I was when he woke up so they could exchange shifts. They continued pumping antibiotics and saline into me, and I continued feeling terrible. I hadn’t thrown up again, but I did have some more diarrhea, which was SUPER FUN when you’re dragging an IV around with you to the toilet. Plus I had my period to deal with, just to complicate matters more — extra cramping, general discomfort, and a nasty headache on top of all the rest. The nurse gave me some Tylenol for the headache, which helped, and Adam brought my hot water bottle with him to the hospital when he returned, which was good for the cramps.

I ate the first of my hospital meals — a turkey cutlet and some potatoes and vegetables. It was everything you expect from hospital food.

Adam left around 7pm after bringing me a dragon from Lyra to keep me company, and my friend Jenn came over at 7:30 for a short visit.  I had been going through some nasty nausea post-dinner and wasn’t sure it was staying down. Fortunately for everyone it did.

That night I slept in a few uncomfortable shifts, waking up because the IV was uncomfortable, or when the nurse came in to check my temperature and blood pressure, or give me more antibiotics. At one point I had a fever again, so the nurse gave me some more Tylenol to help bring it down again.

Monday, December 23rd: How long do I have to stay?

Jenny and Lyra in the hospital
Family time in the hospital bed.

I woke up to a hospital breakfast of scrambled eggs and moist toast and some more antibiotics that left a terrible taste in my mouth. I had not puked in a long time, but I still had liquid stools, which were really not much fun.

A doctor came in to see me, and told me that they still didn’t know what I had, but my tests would probably take another 24 hours to get all the results, so I was going to be staying for at least one more night, possibly more.

Adam somehow found people willing to help with the girls, since he had to work — and by somehow found people willing, I mean had people offering to help from all corners. Lyra mostly spent the day with him, since she could entertain herself as needed, but a friend took Pandra for the day (and then kept her for the night so Adam could get a real night of sleep).

Another friend, Steve, came to spend the day with me in the hospital, which was above and beyond what was necessary. I appreciated having company, though. It was nice to have someone to talk to in my little room. Adam and Lyra came by for a lunchtime visit, and then came by again at the end of the day to hang out with me before visiting hours were over.

I had Adam phone the other Hospital, Royal Columbian, to tell them what was going on with me at Eagle Ridge. My medi-port surgery was scheduled for the next morning at 9am, but I didn’t really think it was going to happen, all things considered. Royal Columbian called Eagle Ridge and spoke to my nurses and doctor, who then came and talked to me about it.

They told me that, if I wanted to go through with it, they could send me to RCH under a patient transfer, where they would take over my care. I didn’t much like the idea of moving hospitals, and my stomach was still not right. The more I thought about going through with a (albeit minor) surgery while still trying to recover from the cold and fever, the less I liked it. I told the doctor that I really didn’t feel up to going through surgery after everything, and he agreed that it was probably for the best to put it off.

Otherwise, it was a quiet day, filled up mostly with random conversation and really hating the taste that the antibiotics left in my mouth. You take the bad with the good sometimes. A few people joked about getting some time away from the kids to rest, and it was somewhat true, but they all knew as much as I did that I’d rather be at home.

That night I had a lot of trouble getting to sleep, and really started feeling like the antibiotic was messing me up as much as everything else. I still had the diarrhea issue, but no nausea any more, and no throwing up. I woke up often throughout the night, though, and it was not nearly as restful as one might hope for. I spent a good part of the night on the internet after failing to fall asleep.

Tuesday, December 24th: Christmas Eve

I woke up on Tuesday morning feeling almost human again and ate another hospital breakfast. I also hadn’t had a fever all night, which made me happy — no fever meant a higher chance of going home, and being home for Christmas.

We had completely missed our opportunity to do our last-minute Christmas shopping. We were going to go on Sunday, but my hospital visit threw that off. We got lucky though; friends ran errands for us, delivering groceries and some Christmas treats for the girls. But I was ready to go home, and be at home with my family, and I think they were ready for me to come home. I anxiously waited for the doctor to show up and give me an update.

He arrived around 9:30am or so and told me that they hadn’t found any C. Difficile in my tests, and no signs of any bacterial infection, so I could come off the antibiotics (yay!). He also said my bloodwork came back saying that my white blood cell count was really good, especially for someone on chemo. There were some other tests that would take about a week to come back — for different parasitic infections — but he didn’t think that would end up being an issue for me. So basically I just got hit, really hard, by a viral infection that gave me a fever. And fevers are bad for me while I’m on chemo, which was why we went to the hospital in the first place.

Since none of the tests came back saying anything really bad, the doctor told me I could go home any time. I thanked him and sent a message to Adam letting him know that I could come home, and he should come get me soon. He was as happy as I was, and said he’d be there within the hour, so I started getting my stuff together and cleaning up my room.

The happiest moment was when the nurse took out my IV. I was so tired of that IV. I was tired of the antibiotics making me feel crappy. And I was tired of hospital food. I wasn’t yet 100% better energy-wise — I was tired and still felt crappy, but not nearly as terrible as I had a few days before. When Lyra and Adam arrived to bring me home, I was glad to leave the hospital. They were really quite nice and treated me well while I was there — all the nurses were kind and friendly, and I never felt like an inconvenience, even though they had to put on extra protective gear (goggles and a paper robe and gloves) just to come into my room so that I wouldn’t get more sick from them. The doctors were also pleasant and easy to talk to. I would recommend Eagle Ridge Hospital to anyone who needed care.

And so I got to go home for Christmas Eve with my family, and was home for Christmas day. I wasn’t stuck in the hospital on Christmas day, and for that I was thankful. A lot of friends came through for us, either visiting me or helping Adam with the girls or delivering groceries or whatever else needed to be done, and they were awesome. It’s impossible to thank them all enough.

Christmas itself was quiet and laid-back. I still wasn’t feeling normal, so we kept things really low key. We had a tasty turkey dinner at yet another friend’s house on Christmas day. It didn’t really feel much like Christmas for me, but I did my best not to dwell on it.

Next Christmas, though, is going to be absolutely amazing. And there won’t be any hospital food.

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