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Day 285: A quick update on Chemo Session 4

I am very late in writing this, but I do think it needs to be documented. My fourth session of chemo was postponed due to the shingles, and I only received it on 27/28 March (instead of on March 7/8). By that time my shingles had disappeared, I was/am on a preventative dosage of antivirals and my white blood cell had recovered well enough to tolerate the further poisoning of my body.

I was, of course, extremely apprehensive about this round. My sessions were not fun up to this point, and I had been in considerable discomfort in the recent past and was in no mood for more. My doctor agreed, and motivated that I be admitted overnight to hospital for the infusion so that the rituximab could be administered extra slowly. Luckily my medical aid agreed (so grateful for this great Discovery plan that I am on!) and I was booked in at about 4pm that day.

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Day 154: First day of chemo

The long road of treatment started with my first round of chemo on Wednesday and Thursday. It wasn’t nearly as bad as some expected, but it wasn’t a walk in the park either.

First of all, as you can tell from the title of this post, I waited quite some time from my diagnosis to start the chemo. That is not that unusual for Waldenstrom patients, who can in fact be put on the “watch and wait” regiment for years before they get treatment. (I was on involuntary “watch and wait” myself for about 8 years, while I thought all I had was autoimmune haemolytic anaemia and was unaware of the Waldenstrom in the background. This was a blessing in disguise, as I managed just fine for those 8 years).

I waited three months for two reasons: one was my insurance which needed 3 months to remove me from its own waiting period (I still had cover during those 3 months, but it was limited. If you are in South Africa and need help with your medical insurance, see rehealth.co.za or speak to me (I run the rehealth.co.za)). The second reason was that I wanted to start treatment in December when work and life in general quietens down in South Africa, so that I could focus on getting better rather than on kids, school runs, work stuff and more. My doctor wasn’t trilled with my decision, and the pathologist team thought I was nuts, but it all worked out in the end.

The day of chemo

I ended up receiving Rituximab and Bendamustine as my chemo cocktail. Rituximab isn’t actually a chemo drug, but it is rather potent and is the one that can give most problems while it is administered. Hence the dosage is spread across two days: day one for Rituximab and Day Two for bendamustine. Bendamustine is actually the mustard (nerve) gas used in the World Wars, if can believe that! And here we are injecting it into our bodies…sigh.

I arrived at 9 o’clock on a Wednesday morning at the oncology clinic, but first had to get a sonar of my spleen as my doctor wanted to use its size as a marker for the before and after treatment comparison. (It turned out my spleen is in the “upper limits of normal” in size, which for Waldenstrom is really great!).

As an aside, when I arrived at the clinic I was given a “goodie” bag, similar to one that you would recive on an airplane, compliments of the chemo drug company. It had moisturiser, lip balm etc. Craig and I thought this was hilarious…why would I want a toiletry bag branded with a chemo drug, and it isn’t as if I am going on holiday any time soon.

A toiletry bag to make you feel more at home??!!!

The Rituximab was administered from about 10am, and I was hooked up to a blood pressure monitor that took measurements every 30 minutes because Rituximab can cause BP problems. Which …wait for it…it did. About 45 minutes into the treatment I started feeling extremely ill and nauseous. I was sure I was going to vomit or fall of my chair. The oncologist nurses quickly took my BP and realised it had dropped drastically. I was really out of it by this stage, but I saw them lower the speed of the drip, and inject something into the drip to help, and the situation was fixed pretty quickly.

My Blood Pressure reading for the day

I was also given an antihistamine via the drip, which knocked me out (great!) and made the time go faster.

I spent about 6 hours in the chair on that first day, which actually passed rather quickly. I was extremely cold however: not only was the aircon on full blast but the Rituximab can give you chills. The nurses gave me hot water bottles, which did help.

The second day was very quick – it took maybe two hours? There was no Rituximab then, only the Bendamustine. I drove myself home, because it takes a while for the drugs to kick in.

The days after

So Thursday and Friday were the days of the chemo, and they were fine. I went home, slept, and carried on as usual.

The shit hit the fan on Friday. I woke up nauseous and vomitted at 6am, and it went downhill from there. I spent the next two days oscillating between feeling “fine but tired” and being sick to my stomach. I couldn’t hold down any food, but I carried on drinking as much as I could (most of it I vomitted, but I didn’t get too dehydrated). I slept as much as I could, and I asked my family to give me a lot of space. My Lisa kept me company! It is safe to say that I spent the two days feeling rather sorry for myself, and with good reason.

On the plus side I made a full recovery by Sunday, and even managed to get out of the house and go and have lunch at my favourite restaurant. I continued to feel fine after that, and even my energy levels seemed to recover faster than expected. I had no hair loss from the first round, and no mouth ulcers (yay!)

If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

Day12: Taking it easy

Seriously, that is my motto for life in the near future. I have nothing to prove. I need to be kind to myself, accept my limits (physical and emotional) and deal within the boundaries that they offer. This actually isn’t as difficult as I might have once thought, and it also isn’t a cop out to do nothing.

Photo by Max van den Oetelaar on Unsplash

I woke up feeling remarkably good today. Certainly better than I have in the past three weeks, because who feels good while in hospital? I had an excellent, relaxing weekend and I slept, and slept and slept…for ten hours each night. That rejuvenated me, and Monday (which I was kind of dreading) actually wasn’t so bad at all.

After being AWOL for weeks, I had a bunch of stuff that I absolutely HAD to do, and another bunch of stuff that I had to do, but without the capitals. Happy to say the former got done, I felt accomplished, and rested as much as I needed.

I am weaning myself of the cortisone (which is the cause of all my discomfort right now) so I am thrilled about that, and even if it is psychosomatic, I am beginning to feel good again. I should be off it completely within 2 weeks.

Tomorrow I go for a CT scan where we get to stage the Waldenstrom’s. This could be good news or not-so-great news, but it almost definitely will not be BAD news. This is the scan that also determines (I think) the intensity of the treatment, which will probably be determined in my session with my oncologist on Wednesday. I look forward to that. I had a session with a haematologist on Friday, which went VERY well, and I will write it up shortly. Lots of interesting stuff came up in that session, most of which left me more relaxed walking out than walking in.

Anyway, speaking of taking it easy: I read another blog that said

“I once read an article that compared being a morning person to adding a 25th hour into the day. Instead of a perfectly curated morning routine, the author simply woke up an hour earlier than everyone else and did what felt best — reading, walking, writing, maaaaaaybe yoga. I love the idea of giving yourself a free hour for ‘me time’ in the cool, calm, quiet morning.”

Well, I love it too. And although I LOVE sleeping in until the absolute last minute, I wonder how I would feel if I woke up an hour earlier and did some fun stuff for me, without the hustle and bustle of daily life kicking in immediately. I am going to try it tomorrow. Or the day after 🙂

If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

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