My chemo schedule

So the first week of chemo is done and it was a very educational one, if also a tough one (in not the ways I expected).

I learned that I am slated for 5 months (12 cycles) of chemo, rather than 4 months. (“Cycle” is what they refer to each 2-week period of chemo. For me: Day 1 is onsite for a few hours; Days 2-3 are at home with a bottle infusing additional chemo. Days 4-11 are for recovery.) Provided we are able to maintain the every-two-week schedule, the 12th one will be at the end of November. Obviously, I want whatever they think is needed to throw at this tumour, but it did throw me for a bit of a loop having an extra month tacked on there.

I only found it out by asking two nurses during the infusion session on Monday. That’s a bit odd. It was very clear at the start of radiation that there would be 28 of those, so I’m not sure why the details of the chemo plan weren’t so clear. I did previously ask a couple of times in my previous touchpoints with the doctor to confirm that it was “4 months of chemo” and she said yes. Maybe they don’t want people to feel overwhelmed? Not sure. Not that it ultimately makes a big difference, but it does help for wrapping your head around things and trying to figure out logistics and such.

Anyway…I’m glad I asked…at least now I know.

My first onsite infusion

The onsite stuff was fine Monday morning. As usual, all the staff were fabulous. Very kind, very helpful and very informative. I brought a back pack with a book, puzzles, tablet, water, etc. I also ordered a little lap desk from Amazon that arrived the next day and will be part of my chemo kit for the next onsite day. I was only there for just over 3 hours, so I can’t see me needing more than that for entertainment purposes

I did learn, though, that I need to bring snacks with me to help prevent nausea. I would have thought food might make nausea worse, so I didn’t bring anything other than water. But they provided me with some crackers, peanut butter and jam, which was great.

I have to say, though, that the lead up to it was a bit stressful. I wasn’t ready for it. I don’t know why. I knew it was coming, but when the PICC line installation was scheduled it through me for a loop. Then the community health nurse called with an appointment to remove the bottle – before even the chemo was scheduled! And then the call came for the chemo appointment. All of a sudden everything became very real. How dumb is that? The symptoms from the radiation where DEFINITELY real. But somehow chemo and its accompanying side-effects made it all seem more real. Maybe it’s all the horror stories we hear about it. I don’t know. But I was quite stressed about it all.

Also…I know once chemo is done, then we’ll find out if it all worked – or not. I’m not dwelling on the “or not”, but it’s a possibility and I think that as long as the chemo wasn’t happening, then the finding out was far enough away. And now it’s not. It’s all that stuff that goes on in the back of your mind, you know? In some ways, that extra month is a blessing, I guess! 🙂

In any event, I was so stressed about it that there were a couple of times during the onsite that I got a bit teary when answering some of the nurse’s questions. Another kind lady. I’ve just been a mess lately.

In addition to the heavy-duty anti-nausea pills I have to take twice on the day of the onsite chemo, there’s another one that they give me onsite, too. It’s a steroid and the nurse (Brenda) explained that it might cause insomnia. She said that since my session was earlier in the day, though, it might not affect me. Spoiler alert: It did.

Getting my Little Buddy

When the onsite infusion was done, they disconnected me from that and then connected me to my Little Buddy – the bottle that would continue infusing for the next couple of days. 

I expected the bottle to be a bit more of an inconvenience, but it wasn’t. It was also fairly easy to deal with in bed as it slides around easily enough of its belt.

Symptoms/reactions

Symptoms-wise, I was very fortunate that I didn’t have to deal with nausea this week, but there were a few hiccups. I felt a little coming on yesterday and took one of the non-heavy-duty pills to prevent it from getting worse.

As I alluded to earlier, sleep was elusive. I hadn’t slept well Fri, Sat or Sun because the PICC line area was still quite tender, but Monday and Tuesday night I really didn’t sleep. I don’t mean “didn’t sleep well”…I mean I didn’t sleep. I dropped off a few times for 5-10 minutes, but nothing deep and nothing even close to restorative. All the snippets cobbled together Monday night might have totalled about 1 hour and Tuesday, being slightly better, maybe 2 hours. But that’s not a solid 1 hour or 2 hours. That’s little snippets added up. I was awake almost the entirety of both nights. Needless to say, by Wednesday I was a bit of a mess.

On top of that (sorry…more bowel stuff!), I also developed more bowel issues, VERY unlike my normal. I had really hoped that my painful BM situation would be resolved post-radiation. Apparently not. No BMs Monday or Tuesday. Tuesday night I made the mistake (so I learned Wednesday) of taking a laxative, but what I really should have done was taken a stool softener. (Word to the wise: a laxative is NOT helpful when you are impacted!) Thankfully, I have access to a nursing phone line and Wednesday morning I was able to get help from a nurse who advised me to get some Restoralax (softener) and a more gentle laxative. I bought a HUGE bottle of the former at my pharmacy when I was on my way to the appointment to remove my Little Buddy. 

You don’t need or want the details, I’m sure, so I’ll skip along. Suffice to say, I had no idea how absolutely painful it could be and was BEYOND happy once it was resolved later than evening. It made me think of Dad who had constipation issues just before he passed. I felt for him in that moment…how that must have felt for him. Bless his heart. 

Other symptoms I had were, as promised, the reactions to cold. My main kitchen counter is full of things coming to room temperature so that I can eat or drink them. Even then, I might still have a reaction. Monday evening, for example, I was drinking some vegetable juice, which had been out for hours, and when I drank the last mouthful, I felt a scratching in my throat. Having forgotten the reaction thing, I wondered if the glass had been broken and maybe I swallowed some glass. On inspection, there was nothing there.

The next day, when I drank some room-temperature Boost, I noticed the same thing and THEN I remembered one of the nurses having mentioned that it could feel like swallowing glass. Ahhhhh…OK. It wasn’t painful…just very odd. So even if something is room temp now, I try to swish it around in my mouth a bit before swallowing to warm it up even more. 

Today when out doing errands, I had the pins-and-needles in my fingers where the car AC was blowing on them. That was weird because I didn’t have that reaction any other time this week when in the car, but there it was! So I adjusted the vents. First I turned the air off, but it was too warm and I had to put it back on. Just not directly on me. 

I’ve also had quite a bit of fatigue this week. Mostly, I think, from the lack of sleep, but probably augmented by the chemo. I have had a hard time getting things done. My place is a mess. I tidy up one area, and feel great about accomplishing something (even so minor) and then turn around to see the next spot that has an explosion of stuff on it. There goes the feeling of accomplishment!

With the GI issues, I have been really struggling to eat, which is definitely not good. If I lose too much weight within a 2-week period that could impact whether or not they can do the next cycle of treatment because all the doses are calibrated to my height and weight and such.

I’m having a struggle figuring all the food stuff out again…I don’t want a repeat of the first half of this week and at the same time I can’t be afraid to eat. Jody said to eat whatever I want…now’s not the time to worry about healthy foods or whatever. Mind you, a lot of the healthy stuff most cancer people can/should eat, I can’t because of the fibre, so that’s out! And there isn’t even really anything that I WANT to eat besides an occasional McDonald’s egg BLT (probably the least offensive thing on their menu, health-wise…ha ha ha). English muffin, egg, small bit of bacon, lettuce and tomato. (Only bit of fresh vegge I’ve eaten in weeks, TBH.) So at least I still enjoy that!

Saying good-bye to my Little Buddy

The bottle removal process Wednesday afternoon was fine. The community health clinic is very close by, which is great. The only issues were related to the fact that I was totally exhausted by that point and the BM issues.

At one point, I felt a wave of nausea come over me – not to the point of vomiting, but almost passing out. Jody (one of the nurses) said when I mentioned I wasn’t feeling well, “Yes! You just went very pale all of a sudden!” Given how pale I already am to start with, I can only imagine how pale I must have been for her to have been able to remark it!

She very kindly put a cold cloth on my forehead, face and the back of my neck, attributing it to my vagus nerve. They were so kind. Nobody enjoys being seen in such vulnerability so such kindnesses are even more meaningful.

A couple of bright spots this week

Yesterday a knock came to the door and when I answered it, there was a delivery guy with a lovely edible arrangement! It was from my boss Fred! (I’m off work, but he keeps in touch regularly, which I appreciate.) I can’t eat most of it because of the fibre, but it was sure a beautiful bright spot this week. Plus, I have wanted to try watermelon – it’s mostly water, so it might be fine – and I also want to try at least one chocolate-covered strawberry. But the pineapple and mango are too fibrous for sure and my friend Shamima will help by appreciating those. 🙂

Then today, my friend and former colleague Brenda sent me a gift of two aromatherapy candles that have jewellery in them when they melt! One of them I might not be able to use (because of scent issues I have – boy, I’m hard to please!!!), but it will probably be perfect in the spare bedroom. The other one smells divine and hopefully will not cause any issues. Either way, I’m using them!

The rest of this cycle

Today’s plan is to cook up a batch of meat sauce. I can have that with plain pasta. Nurses have said I need to go high-calorie to stop losing weight, so I should add things like cheese, peanut butter, cream cheese, sour cream, meats, etc. to things as much as possible. I also want to boil a bunch of eggs and have them on hand as easy protein/calorie grabs. But that might not happen today.

In addition to the learning about this whole process, it has also been educational about the difficulties of doing this when you live alone. There wasn’t anything in particular I could have asked someone to come do for me, but I tell ya…there have been a couple of times when it would have been nice to flop down next to someone and just sob on their shoulder. At the same time, I am also very grateful that I don’t have to try to take care of other people while going through this.

This is week 1 of the first cycle. Next week should be better. If I can eat and sleep, I’m sure they will be. Symptoms are cumulative, so things will continue to mount. I need to wrap my head around all that and get ready. But for today, it’s just going to be a sad day and I’m going to cry for a while. I’m not saying that for pity comments – I’m saying it only, as with this whole endeavour, to be as honest about this process as possible in case it’s helpful to someone else. Maintaining a positive attitude doesn’t always look like smiles and bluebirds and rainbows. I haven’t had a cry day for a while, so this is going to be it!

That said, despite the overall sad tone to this post, please know that I know I am loved and am blessed to be surrounded by wonderful, caring people. And not just because of unexpected gifts. There are so many kindnesses, large and small, that people do for me. I truly am blessed.<3

Resources

Some links with more info:

• Stay Warm With Cold Dysesthesia – PHO (hemoncnc.com)
• Eating Well During Your Cancer Treatment | Memorial Sloan Kettering Cancer Center (mskcc.org)

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