Category: My Lymphoma/ Waldenstrom Macroglobulinaemia Page 2 of 5

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.
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    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.

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.

Day 31: A month already??

I can’t believe it’s a month ago that I got my Waldenstrom’s diagnosis. I think I can best describe the past month as a rollercoaster: it’s been a hectic 30 days, but also it has been a relatively normal 30 days. There has been a lot of doctors, and tests, and procedures and a whole lot of Googling…but nothing life changing. Other than a cancer diagnosis, that is.

The emotional stuff

Emotionally, it’s been…weird? My attitude to the cancer changes regularly. I have days where I think that once I get past the chemo I will be fine for years and years, and there are other days when I think that “this is it” – I am a cancer patient for life.

For example: I have been booked into hospital three times in the past six weeks or so. The first time was pre-diagnosis, for a simple IUD change. When the nurses/anaesthetists came to ask me about illnesses, medicines etc everything was a “no, no, no”. No I don’t take medication, no I don’t suffer from hight blood pressure, no I have no heart problems etc. I merely mentioned that I was diagnosed with pregnancy induced haemolytic anaemia 8 years ago, but that’s it.

Fast forward a few weeks later, and I am being asked the same questions and suddenly I have a list of meds, and I have to say that I have a Lymphoma (What kind? Can you spell that?). I was devastated when I had to give these answers on my last admission, because I realised that this is now me. Forever and ever. Me, who never got sick, who has never been to a GP, who never picks up the bugs that always catch Craig. I am now permanently ill. And I don’t feel that much different than I did two months ago.

Family

I also have to be very careful about my emotions around my family. As you can imagine, my kids were petrified when they found out. And my mother! The policy here (enforced by me) is that I am always going to be honest and open, but not dramatic. I want my kids to know that I am telling them everything, so they never need to worry if I am dying or not (Zac’s fear), but I also am not obligated to take them through the more technical or emotional stuff either. It is working out really well so far, and I think my kids are secure that given the information I have now, I am going to be around for a while. It is particularly important to be honest with kids, and to have an open channel of communication, because they have access to Google, and will find the things you don’t want them to find. For example, Micole obviously googled Waldenstrom’s and came across the life expectancy stats that I talk about here, and freaked. So it’s just important to talk, answer questions while not putting in unrealistic koombaya-like expectations.

Also, kids are like sponges. When I came out of hospital post-diagnosis I immediately went to Zac’s teacher to chat to her about it. As I walked through the door, she said it was good to see me because she has been worried about Zac…he has been very distracted the last week or so. See?

Work

I also had to decide how I am going to deal with this news and my colleagues. Craig had already adjusted his work commitments to accommodate my illness and to ensure that he is there for me (And he has been!). I had to decide how much I wanted/needed to share with my other colleagues. Fact of the matter is, since I am so open about everything on this blog it would be madness to hide it from them or not to inform them, because they would find out anyway sooner or later. But also…what do I say? “Hi, just a quick heads up that I have Stage 4 lymphoma in my bone marrow but I’ll be fine?“. It’s a difficult line to walk, and I am managing it on a case by case basis.

And what about me?

And then of course, there are my alone moments, when I contemplate my immediate and long term future, by myself and without the pressure of putting on a brave face in front of everybody. And I’ll be honest, those days vary, and I let myself go with the flow. Sometimes I am optimistic and determined, other times I am petrified of the chemo. I worry about my kids, especially Zac because he is so young and still needs me for a long, long time. I need to stick around for him. I get sad that we’ve had to put our plans to live overseas on hold for a while (but not too long, we hope) and there are other plans that Craig and I had as a family that need to just wait a bit now. I sometimes wake up in the middle of the night and start googling and googling and researching. Sometimes it’s good, other times it’s scary. Like I said, a rollercoaster.

Of course I spend time thinking about money, and leaving my kids well looked after. About leaving a legacy. About leaving a bit of myself behind for my kids to always have (letters?). About writing books. But I also remind myself that unless something goes very very wrong, I am not dying anytime soon. And, I could always have already been hit by a bus (this applies to you too), so we should all, always, live our life to the fullest now.

The one good thing is that I have now given myself permission to prioritize myself and my health. Yes, I need two naps during the day, so I take them with no guilt. If I am tired or weak, I react accordingly. I don’t do social stuff that I don’t feel like doing, and I am streamlining my work even more (Although there are limits to this, which I shall talk about in another post).

Friends and family

At first, my mother was worried sick, but is now better. My sister shares my attitude of “Please, no drama, just deal with it as best you can” and Craig is my rock of reason in all the madness, and constant pillar of support. All the good wishes and sentiments, private messages and emails…I value them so much. Love to you all. You’ve all been wonderful – except for one inconsequential weirdo who has been stalking me online for about 9 years (hi!!) and makes sure to jump for joy every time I post something negative about my life…and also lets me know this.

(Btw…this little poem pretty much sums up how I deal with negative people like that. It works like a charm. Basically, ignore them and remember to live your best life, now. This also works well when you find yourself in a social media war. Just shrug, and carry on living your best life. They hate that.

Onwards and upwards. XXXX

 
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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