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Is it too late to reflect on 2018?

I think not!

Overall, I really enjoyed my 2018. Yes, of course there were some quite severe downs (cancer, death), but overall there were no serious setbacks. I learnt a lot of tough lessons, learnt that I was strong and resilient, worked on my priorities, and did what mattered most.

Let’s reflect on the main events and lessons:

  • We lost Zaider. Craig’s father passed away in April. That was obviously a very sad time, and one that brought on a n opportunity for refection.
  • I severed a partnership, and thus also a friendship. This was a tough one. I had been getting gut feelings that things were not right for some time, and tried to ignore them. But I also prepared myself for the worst. When the rug was pulled out from under me, I remained standing. Very proud of how I handled all that.
  • I was diagnosed with cancer. Oh well. Gotta make it work. There were other health issues too, all sorted?
  • We got a puppy! We love our little Lisa, and can’t remember that there was ever a time that this pup was not in our house!
  • The kids flourished. Do I need to ask for more than that?
  • Craig and I celebrated 9 years together. Going strong, babes!
  • We enjoyed the World Cup!
  • We ate well!
  • I started this blog!

Regrets?

  • We didn’t do nearly enough “stuff”. I think it is because of my health issues. I was always tired, and not eager to get out the house for trips. I definitely intend to change that in 2019, and am planning an awesome July experience. Fingers crossed.
  • I didn’t read enough. Again, I think it was a lack of concentration due to health issues. Will rectify!
  • I dropped the ball at work more than I care to think about. Once again, health.

Intentions

  • Spend as little time on social media as possible. I mean this one. I’ve already deleted Facebook off my phone, and it has saved me hours per week. I would rather put that time into this blog.
  • Work on this blog. At this stage, I am writing here but am very quiet about it. Once I know that I can maintain a regular posting schedule, I am going to try and “get it out there”. I much prefer this medium to Facebook or other apps.
  • Read more. This goes for me as well as fr my kids. I got an hour watch-glass (egg-timer) for Christmas from Micole, and we are going to use it for one hour communal reading time, on the couches, for the whole family every day. We meant to do it last year but…we didn’t. The benefits will be amazing for everybody.
  • Write more. I say this every year. Maybe in 2019 I am actually going to do it?
  • Cook one good meal a day. As for the rest, work out a good plan. (I think I have managed this already, and it deserves its own post which I will hopefully write soon).
  • Stay away from politics as much as is responsible. This applies to the US, SA and UK specifically.
  • Achieve all my Vitality Reward goals. As soon as I get the app to work!
  • Turn my business into a multi-million dollar success. There, I said it.
  • Go back to public speaking. Maybe. Will think about it.
  • Maintain my priorities. That’s kids and Craig. Work can wait.
  • Look after myself. By being kind to myself.

Day 184: Second round of chemo. Not fun.

(Note: This is a boring, technical post about my chemo. It is written only for the benefit of others who might be anticipating the same treatment, or who are receiving the treatment and want to compare notes. If you are not a WM sufferer, you probably want to move on 🙂 )

I walked into the second round of chemo slightly apprehensive, but overall very confident that “I’ve got this“. The joke, clearly, was on me.

It is quite safe to say that January 10th (the first of the two days of the treatment) was the worst medical day of my life. I hope it stays that way.

Quick Assessment

It started of the usual way. I had my blood tested and spoke to my oncologist. The results were okay. There was certainly no great improvement in any of the counts, but the blood platelets had also dropped back down to the 400s (from 1450, which was alarmingly high). My haemoglobin also started dropping, down to 11.9 (I still don’t know what had made it jump to 13 a couple of months back, and 11.9 is still higher than it has been in years. This is not due to the chemo, as the jump happened before I started treatment. ). Overall, the doctor was happy with the results, and I was prescribed the same chemo protocol as last time, Rituximab and Bendamustine.

Rituximab

It was no surprise that – just like last time – my blood pressure dropped quickly as soon as the rituximab was administered, and I started feeling nauseated and like crap. And, just like last time, they gave me meds to fix it. Except that this time, the meds only fixed the blood pressure. The feeling of nausea remained, and brought with it the most excruciating backache I had ever experienced.

Now, to give you some background: the chemo gets administered while patients sit in rows of “Lazy Boy” chairs. The theory is that these have foot rests and can be reclined fully so that you can be flat on your back should you choose to be. But in my clinic, there is not enough space to recline the chairs, and so you have to sit upright. And let me tell you: if you are feeling so nauseated that you cannot stand up, and have excruciating back pain the very, very least that you want to be able to do is lie down. But I couldn’t. I asked for a bed..none were available. To cut a very long and very painful and uncomfortable story short, I did eventually end up in a bed, I did eventually get the right pain drugs to alleviate the pain (five hours later!) and I did eventually vomit (about 6 hours into the treatment). I am very, very unhappy with the clinic, with how everything was handled, and with the care that I received. I will certainly be taking this up with my doctor when I next see her, and it is very possible that unless she has a better solution I am going to just book myself into the hospital for my next treatment (which took about 8 hours this time).

The dreaded IV line. You can see the chairs in the background.

I know that you are probably thinking that I am whinging for no reason. A bit of nausea and back ache? Pfft! But believe me…this was bad. Very, very bad. I remember lying there in agony thinking that if this is a permanent state of affairs (I know of many other WM patients who have tremendous bone and muscle pain permanently), then not only was I not going to be able to work, ever again, but also I wouldn’t be able to do anything at all. So I pretty much sat in that f’ing chair, and imagined how my life was over. A bit dramatic, but that’s what pain will do to you.

Eventually, in the last hour of the treatment, the pain meds kicked in and I passed out. I was taken home (without any further script for pain as the doctor was no longer there!!!!) and prepared for the worst. Luckily, the pain meds were to last until 10pm, by which time I was fast asleep, and I haven’t experienced pain since. I do think that the combination of rituximab and that chair is not the right one for me, as the rituximab seems to cause some sort of muscular spasm in my body (I had experienced similar pain a couple of weeks back, in all my joints).

I went back the next day, but that was just for the bendamustine, so it was relatively easy and quick. I find it somewhat ironic that the chemo drug gives me no problems, and the non-chemo drug (rituximab) is trying to crush me.

Recovery at home was crap, but at least it was pain free. Mostly a lot of nausea, weakness, disorientation and lethargy. All in all, I suffered from minute one of the treatment (Thursday) all the way to about Sunday. By Monday I was mobile, and started to regain my strength, and by Wednesday I was pretty much back on my feet (which was a good thing, because my daughter ended up being admitted to hospital that day! More on that later). This was a worse recovery than for my first treatment, so I am expecting it even worse for the third (it is natural that each treatment is worse than the one before). The very very good news is that based on some research I have been doing, I will not have 6 treatments but 4, as it seems that the effect for both is pretty much the same. I will discuss with the doc, but I can’t imagine that I will end up having a fifth and sixth treatment. Holding thumbs.

Side note: recovery is tough on the family. Nobody likes watching me suffer, and everyone is pretty helpless. My pup lies with me constantly, Craig buys me flowers, Micole brings me tea and water and for the most part everyone just tries to let me sleep as much as possible. However, I find that it is extremely important for me to move as much as I can while I am recovering (needing to go to the bathroom constantly helps) so I try to get up and at least stumble into the kitchen or onto the couch as much as I can.

Little Lisa will not leave my side when I am feeling ill

Overall, the changes I have noticed:

  • I am drinking a lot of water. Probably 4 times as much as I usually do. This is not conscious. I am just thirsty all the time.
  • I have gone off coffee. In fact, I think one of the reasons why I felt like crap the week after the treatment was becasue my body didn’t want coffee, but was still suffering withdrawal symptoms from lack of caffeine
  • I am tired, but not as tired as I would expect to be. I take about 2 naps a day, and take things slowly.
  • I have no inclination to work. I have delayed going back to work twice already this January, and hope that when I DO go back (Monday, 21st) I will stick to it. Not healthy for me or my bank balance.
  • I have a slightly upset stomach post treatment.
  • I have slight “chemo-brain”, especially if I have been concentrating on something for more than 45 minutes and if I am tired. I have a worse very short term memory than before treatment, but I can easily compensate for that.
  •  
    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.

But where did the time fly?

Photo by David Clode on Unsplash

So, technically it’s four months since I’ve posted on this blog, almost to the day! But I am going to do a massive cheat and write “in-between” posts corresponding to the chronological date that they happened (like my first chemo treatment, for example, or my reflections on 2018) and simply change the date on the post. Sneaky but effective.

(So if you are reading this post January 2019, in chronological order, and don’t see the 4 month gap, that’s why!)

If you are wondering why I don’t just write those filler posts instead of writing this one first (or why there is a frog in the featured image), it’s because I needed to “swallow the frog” and post something small and quick here, so that I wouldn’t be hesitant to post the bigger news.

Eating the frog means to just do it, otherwise the frog will eat you meaning that you’ll end up procrastinating it the whole day.
Once that one task is done, the rest of the day will be an easier ride and you will get both momentum and a sense of accomplishment at the beginning of your day.

In the meantime, I am mentally preparing to do my second round of chemo treatment on Thursday and am hoping that it goes the same (or better) as my first. If that’s the case, then I can write off Thursday, Friday, Saturday and Sunday but start the following week (and the work-year) on a bright note on Monday.

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