If you’re not living life on the edge, you’re taking up space

It’s been a crazy few weeks. Crazy enough to get me back to this blog after I don’t even know how long. I’ve posted updates on Facebook over the years, but I know this one is going to be waaaaay too long for Facebook.  Go and grab a cuppa if you plan to read on.

An (attempted) brief summary of the past few years:

  • July 2015 to July 2017 – On Pembrolizumab (immunotherapy) clinical trial. Always had a few small spots lighting up on scans but deemed to be in remission.
  • December 2018 – scan showed relapse. Confirmed on biopsy of lymph near hilum of kidney. Not straightforward surgery and complicated by a wound collection necessitating readmission to hospital and return to theatre for drainage. Wound took about a month to close up. That’s how I roll.
  • March 2018 to September 2018 – Started back on Pembro. Scan at 3 months showed a great response (not remission) but scan at 6 months showed progression.
  • September 2018 to May 2019 – Much arguing with haematologist about plan going forward. He wanted me to have radiation. I didn’t want to have it. I ended up agreeing to do it but he agreed to attempt stem cell collection first, to have my stem cells in storage as a back up plan if radiation didn’t work and chemotherapy subsequently did; he was prepared to try a second autologous stem cell transplant. There was growing evidence that people respond better to chemotherapy after having immunotherapy. Part of the stem cell mobilization process involved giving me a single dose of chemotherapy. A drug called cyclophosphamide. That landed me in hospital with febrile neutropenia and the stem cell collection was a failure. My bone marrow had been too battered by past treatments and just could not produce the stem cells. I was devastated. I had been banging on about a second auto for four years, and now that chance was gone. I asked for another PET scan before starting radiation just to make sure my lymphoma hadn’t progressed and the radiation was still going to cover everything. That PET scan, on a Friday, with radiation due to start on Monday, to everyone’s complete shock, showed a complete metabolic response. No evidence of lymphoma. For the first time in FIVE YEARS. So radiation was cancelled and I then had nine cycles of a drug called liposomal doxorubicin. It was considered to be safe and effective in heavily pre-treated patients like me. It did cross my mind at the time that maybe I should have had still had the radiation and cousin Sonya also asked a very sensible question, which she is very proud of; why wasn’t I continuing on with the same drug that got me into remission? There wasn’t really a good answer for that but I think it came down to there not being any evidence for it but there was some evidence for the liposomal doxorubicin. People didn’t understand why I was still having treatment if I didn’t have lymphoma anymore. I got screamed at for “beating cancer but pretending everything was still bad”. Of course I was elated to be in remission, but there were no huge celebrations. I understood perfectly well what was going on, and I was still having chemo, FFS! One clear scan in five years does not mean a cure. There was almost certainly some lymphoma still floating around, just not enough to show up on a scan. The hope was that the liposomal doxorubicin would mop up anything left. Two further scans in January and March 2019 showed that I was still in remission. Wow! I was referred to another haematologist to discuss a donor stem cell transplant, something I had zero interest in. I still didn’t have a match anywhere in the world so all of my siblings were re-tested to see if they were half matches. A half matched transplant (called a haplo) is possible but of course is riskier than a fully matched transplant. The haematologist thought I should do the transplant, but wanted to see that I was in a deep remission first so suggested that I stop chemo and if the next scan showed remission, then I should do the transplant. It’s a massive undertaking and even if it’s successful in curing the lymphoma, you live with effects such as graft versus host disease for the rest of your life, and this can be debilitating and ultimately fatal. I was not interested. I figured that the fact that I was in remission from one dose of cyclophosphamide, a drug that wasn’t even given to treat my lymphoma, was so god damn ridiculous, it was only a tiny bit more ridiculous to think I might be cured. Haematologists didn’t disagree with me.

I posted this analogy on Facebook to try to explain the decision I was faced with.

I saw another haematologist on Friday, at the request of #besthaematologistever, to get an opinion on the donor stem cell transplant I don’t want to have. In a nutshell, he thinks I should do it (no surprise) but not right now (big surprise!) He says I should stop chemo and see what happens. If I relapse quickly off treatment, the transplant is off the table because it simply won’t work. If I’m still in remission in around three months, he thinks I need to do it then. If I don’t, I might relapse later and never be able to get into remission again and I will have missed the window of opportunity. But I might never relapse and not actually need it! The expectation is that I will relapse, hence the advice to do the transplant. It’s no walk in the park. One in eight people die from complications within the first twelve months. It’s certainly not a smooth ride for those who make it through either and the chance of being cured is about 50%.

I’ll explain the decision I have to make using Geoffrey Nyssen’s skydiving analogy (with a few tweaks).

Imagine you’re on a plane, and you’ve been on this plane quite a few times before. It’s a shit plane. Every time you go on it, you get injured one way or another, so you’re that little bit weaker every time you get on. This time, you get on with 7 friends and you’ve all got parachutes with you. The pilot tells you the plane is heading towards a mountain and he thinks he’s going to crash, but he’s not sure. The plane might crash or it might miss the mountain and land safely and you’ll be absolutely fine. So you could jump, but the catch is that one of the parachutes doesn’t work! Someone is going to die. Even if you get a parachute that does work, they’re a bit dodgy and you’re still going to be injured. And there’s only a 50% chance that you’ll never have to get on the plane again and there may not be any parachutes next time. Would you stay on the plane or would you jump?

So tomorrow is my “last” chemo. For about the fifth time. Next week I am getting on a plane, but not that plane. There won’t be any parachutes. There won’t be any mountains to crash into (I hope). The plane will take me to Bali because I believe there is no better place to put your head in the sand.

In other news, all three siblings are half matches and therefore potential donors. It’s game on to see who is the winner for the transplant we don’t want. And I got called a bitch on the tram on the way to the appointment. 🤷‍♀️

P.S. There are two correct answers to the question above. Bali and pink champagne.

Bali was awesome, by the way. What was supposed to be a 7 night girls trip turned into 11 nights thanks to not one, but two cancelled flights.

So that brings us up to the present. My last chemo was on 7th May and my haematologist wanted to wait two months before scanning. That was around the time I’d be heading off to Bali, yet again, but with the kids this time. 9th July was scan day. In the week before the scan, I ran over my son’s bike in the garage, that he’d pretty much left under the passenger side wheel ($250 to fix that) and my 17 year old dog had 28 teeth removed ($1000 for that) and survived!

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My little, old dog recovering from his procedure. Such a trooper!

The notion that bad things happen in threes didn’t occur to me at the time. I’d been feeling good, going to gym,  working, running around after kids. I had no reason to suspect I might have relapsed, other than the knowledge that cancer is a sneaky Mofo and you take nothing for granted. So when fave cousin and fave sis asked me how I was feeling about the scan, I said “my gut says clear, my head says not clear”. In hindsight, it was probably actually the other way around. It was my head saying “you have no reason to suspect relapse” and my gut saying “don’t be so sure”.

So the consultation to get the results of the scan done that morning went something like this:

Doc: How are you?

Me: Good. How are you?

Doc: Not good.

Me: Oh. Why?

Doc: Your scan.

He then proceeded to read out the summary of the report which said multiple retroperitoneal lymph nodes (that’s in my abdomen) and one hilar lymph node (that’s in my chest). Deauville score 5 (that’s the highest score you can get and pretty much means “this is cancer!”).

I wasn’t gobsmacked by this news, annoyed and deflated,  yes, but gobsmacked, no. The old gut was right again. He talked about possible treatment options,  but because I’m impatient and insist on getting my scan results the same day, he hadn’t had time to think about it or discuss it with colleagues. He then asked me to look at the computer screen, at results of my blood tests. My haemoglobin was low (anaemia), my albumin was low (that’s a protein in your blood and it’s kind of a marker of just not being well if it’s low) and the anaemia was macrocytic. I won’t bore you with the details of what that means, but it’s basically a description of the type of anaemia and leads to a long list of possible causes. I brushed it off and said “I’ve been macrocytic forever”. He showed me that I had been macrocytic, then I was normocytic for a while and then I became macrocytic again. He said the picture raised a suspicion of myelodysplasia but it could just be my bone marrow recovering from chemo. He said he needed to rule out myelodysplasia as that would impact my treatment options. I knew exactly what that meant. A bloody bone marrow biopsy. Myelodysplasia is hard to explain. I think in the simplest terms, it means your bone marrow isn’t working very well. Down the track, it turns into acute leukaemia. Nobody wants myelodysplasia, least of all someone with stubborn lymphoma. It is a well recognised complication of a crap load of chemotherapy, and a crap load of chemotherapy I have had. It’s pretty bloody rare but it happens. My haematologist just shook his head and said “you don’t want myelodysplasia”. That much, I knew. He told me I looked good and asked if I’d lost weight. I said I had – immediate look of concern and raised eyebrows – but that it was absolutely, definitely intentional. Loss of weight, fevers and drenching night sweats are B symptoms in someone with lymphoma and indicate that your disease is behaving more aggressively. I’ve never had them, but that doesn’t mean I won’t ever get them, so anything that might be a B symptom is always met with concern.

So the bone marrow biopsy. I was leaving for Bali in two days and I needed to have it done before I went as there were certain tests that would take a few weeks for results to come back. He didn’t want any further delays once I retuned from Bali. So he picked up his phone and tried to arrange one for the next day. I’d have to be admitted as an inpatient to have it done. Ridiculous! He asked if anyone could be bumped from tomorrow’s outpatient list and then asked me to wait in the waiting room and he’d get back to me.  He said to the person on the other end of the phone that it was a pretty soft indication (meaning he didn’t really think I had myelodysplasia but he was being thorough). That was comforting. I knew there and then, that all roads were leading to the donor stem cell transplant. I could not see any way of avoiding it now, as long as I could get back into remission, which of course was going to take some work. This was just SHIT!

I went to the waiting room and about five minutes later, he called out to me, with his mobile in his hand. The conversation went like this:

Doc: Can you come in on Thursday for the bone marrow biopsy?

Me: I’m going to Bali on Thursday!

Doc: What time?

Me: Flight leaves at 5:45 pm. 

Doc: Well, you can have it first thing in the morning. If you have it without sedation, you can leave earlier.

Me: Ohhhhhh no. I’m not doing it without sedation (memories of my first bone marrow biopsy done by a nervous registrar who needed three attempts to get a successful biopsy come flooding back).

Doc: Look. I’m doing everything I can here. You’re going to have to compromise! You sort it out!

And with that, he shoves his mobile in my hand and returns to the patient in his office who he has left to come out and talk to me. I actually had a little chuckle. Our relationship is such that he can talk to me like that. Had an earlier haematologist spoken to me like that, I probably would have punched him in the throat.

So I chatted to the registrar and we agreed that I would have the biopsy on Thursday morning and we’d decide on the day if I was going to do it with sedation (I’d have to wait around for two hours afterwards) or without sedation (I could leave after an hour). The hospital is about an hour from home and half an hour from the airport. If I had sedation I’d probably have to take the kids with me, which would mean getting them up at 6 am, dragging them into hospital, then going to the airport, flying to Bali on a flight arriving at about midnight Melbourne time, and then getting to our hotel at around 2 am. No. Thank. You. I was going to have to do it without sedation.

Fave sis picked me up at stupid o’clock and off we went for bone marrow biopsy number 4. As it turns out, it wasn’t an all or nothing thing. There was the option of sedation or “the green whistle” (penthrox). I’d never had the green whistle before and the registrar assured me that some people prefer it to sedation as it really sends them off with the fairies. Whilst I do love a bit of sedation, I went for the green whistle and it was fine. It really comes down to a competent and confident registrar doing the biopsy and thankfully I scored one of those. I was wheeled out of the procedure room at 9:40 am, was putting my shoes on at 10:35 am and at 10:40 am, I was out of there! We raced home, threw the last few things into the suitcase, apologised to my lovely friend, Kate, who was looking after the house and the old dog, that I didn’t have time to change the sheets on the bed, quickly showed her where a few things were and charged out the door to get on the bus to the airport. We made it! Exhale.

It had been such a whirlwind since getting the news of the relapse, with packing for Bali and a bone marrow biopsy thrown in for good measure, that I hadn’t really had time to think about it too much. Once I sat down on the bus, I had time. But I had to keep my shit together because I was in a public space with my kids! Some of the thoughts that went through my mind were ‘Well, this is it. I’m gonna die. Better make this a good last holiday with the kids. We’ll do everything and no expense will be spared. Geez, I hope I don’t have myelodysplasia. That would be really, really shit! Of all the things you could possibly think of when you think you’re going to die, these are the two random things that dominated my thoughts:

  1. Who is going to braid my daughter’s hair for cheer comps?
  2. The thought of a Vale in the Royal College of Pathologists monthly newsletter.

Rrrrrrrrrandom!!

With regard to number 1, look, I’m a pretty mean braider, if I do say so myself, but seriously??? I think there will be bigger issues than who is going to braid my daughter’s hair. Anyway, fave sis, that will be your job. And number 2? I got nothin’.

So anyway, we eventually arrived in Bali and got whisked off to our resort where we were very pleased to be informed that we had been given a complimentary upgrade to a private villa with our own personal butler. Whaaaaaaat? Well after the day I’d had, I felt like I deserved it!

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Off we go, to our private villa.

 

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Private pool in private villa. Nice!

As soon as we walked into the villa, I started searching for the remote to turn the air conditioner off and I said, “Geez, it’s freezing in here”. My daughter looked at me like I was insane, a look I am quite used to, and said, “ummm, no, it’s not!” Oh crap! I knew straight away that I wasn’t shivering because it was cold, I had a fever. I rummaged through my suitcase to find a thermometer and sure enough my temperature was over 38. Most people wouldn’t have even checked their temperature, but with my history, a fever can be a big deal. It was late, so I took some panadol and went to sleep. I’d worry about that fever in the morning.

I woke up with a bit of a wet singlet. I’d been a bit sweaty overnight but it wasn’t a drenching sweat. Nevertheless, alarm bells started ringing. Was my lymphoma suddenly running rampant and I was having B symptoms, for the first time in six years, which just happened to start the moment I arrived in Bali? I’d lost weight intentionally before coming to Bali but it had come off pretty easily so maybe it was actually the lymphoma and not what I was (or wasn’t putting in my mouth). I also had been getting a bit sweaty at night for a while but it was so cold in Melbourne that I had an electric blanket and I’d been falling asleep with it on. That’s a good enough explanation. Isn’t it?  Shit! Stay calm, Melissa. It could just be a simple virus. I started to get the sniffles and a bit of a cough over the course of the day, so I was leaning towards a virus. I’d be fine. My temperature stayed down for most of the day but by around 4 pm, I started getting the shivers again, felt like crap, and up it went. I mustered up the energy to head out with the kids for dinner and to watch the football, but I felt really ordinary. I took some panadol and once that kicked in and my temperature came down, I felt better. We had some dinner, watched Collingwood beat the Eagles by a point, and went back to our villa to bed.

Again, I woke up sweaty. B symptoms? Myelodysplasia that had already transformed into acute leukemia? Why was this happening in Bali?? I might have to abandon the holiday and go home! Do I just jump on a plane to Darwin and get checked out and then come back? Or do I go back to Melbourne?  Do I take the kids with me? Or do I ask their father if he can come over and finish the holiday with them? All of these thoughts were running through my mind. I even considered writing one of those “if you find this letter, I’m dead” letters with all my passwords and things  my family would need to know if I died. How bloody ridiculous is that? It was probably because I was reading a book at the time that started like that. Anyway, the voice of reason stepped in soon enough and it occurred to me that this is the difference between people who have anxiety and those who don’t. People with anxiety don’t have  voice of reason. By this stage I had developed a bit of a productive cough so I probably just had a chest infection. I’d get some antibiotics and everything would be fine.

We moved hotels that day, which was Saturday. We stopped at a pharmacy on the way; fortunately you don’t need prescriptions in Bali and fortunately I had a clue about what the best antibiotic would be to cover a chest infection. I was sorted. By the time we arrived at our home for the next two weeks, I had the shivers again and the first thing I did when I got to the room was to find my cardigan. I was freezing! In Bali! Ridiculous! I felt so crap that night that the kids had burger rings for dinner. I couldn’t even be bothered getting room service. Mother of the year!

It was around this time that it crossed my mind that I possibly had an infection called Pneumocystis jirovecii pnemonia (PJP). This is a nasty little fungus that only affects really immunocompromised people, like HIV positive people, or people on chemo. I’d had it twice before. The first time was in 2014 and I was in hospital for a month. It was touch and go there for a while. I was delirious for most of the admission. I had chest surgery with tubes hanging out of my chest afterwards, fluid drained from around my lung, fluid drained from around my heart and spent a night in ICU. My family got the “we don’t think she’s going to make it” talk, which I had absolutely  no idea about at the time. I really didn’t know how sick I was until a few months later when my family filled me in and my haematologist (the one who was trying to kill me, not the current one) said, “you nearly died!” I never got around to blogging about that experience. I probably wouldn’t have had much to say since I was so off with the fairies. Ha! Who am I kidding? I would have found a few thousand word. Fave sis even started writing a celebrity guest blog post. She should probably finish that and post it one day. The second time I had PJP, I was nowhere near as sick. I stayed out of hospital and it cleared up with a course of Bactrim (bloody huge tablets that are hard to swallow). While I was having my most recent course of chemotherapy, I was taking prophylactic Bactrim – that means taking a low dose to prevent getting Pneumocystis or other opportunistic infections, rather than taking a high dose to treat it. I had stopped taking it about a month ago as I had a blood test that showed the level of a certain type of white cell was high enough so I shouldn’t be at risk of getting it. So therefore I shouldn’t have it, but the symptoms I was experiencing were eerily similar to the first time I had it.

I felt like I was getting better on the Bali antibiotics but I decided I needed some Bactrim in case they didn’t do the trick and I really did have pneumocystis. I casually messaged Kate, who was staying at my house, and told her where she could find my stash of Bactrim, and messaged nurse Lozza, who was coming to Bali on Monday, to ask if she could pick them up, and a few other things I’d forgotten, and bring them over. I didn’t mention anything about what was going on to anyone in my family as I knew they would completely freak out and insist I come home.

I had exchanged  a few emails with my haematologist (I’ll just refer to him as #bhe -best haematologist ever from now on, it’s easier to type) as he was keeping me in the loop with his communications with overseas experts regarding what the best treatment plan for me would be. In an email on Monday, I mentioned that I’d been having fevers but that I’d started on antibiotics and I felt like I was getting better. In one of his emails on the Tuesday, he asked what I thought about going back on the immunotherapy drug I’d been on previously, in combination with the chemotherapy drug that had got me into remission last year after a single dose (cyclophosphamide) and attached a few papers suggesting there was synergism when the drugs were given together. I said I guess that made sense since it got me into remission when nothing else had but was he sure my bone marrow could handle the cyclophosphamide? He said yes, at low doses and also gave me the wonderful news that my bone marrow biopsy was looking good. There were still a few tests to be done but there was a low index of suspicion for myelodysplasia. “Thank fuck for that”, is what I said in my head but “thank goodness for that”, is what I wrote back. That was a huge load off my shoulders. Even though the results were only preliminary, I was VERY relieved. I shared the good news with a few people back home but still didn’t mention my fevers. Also, fave cuz felt EXTREMELY intelligent for asking that question months ago about why I didn’t continue on the cyclophosphamide after it had gotten me into remission. Savour the moment, cuz.

So by now, nurse Lozza had arrived in Bali with my drugs and we’d made vague plans to catch up that day. We were staying at different hotels, about half an hour apart. By this stage, I knew the Bali antibiotics weren’t working and I really needed that Bactrim! Did I go and get them that day? Nope! I couldn’t be bothered. Instead, I booked a quad bike tour for the next day, because that’s what you do when you feel like crap. I’d promised the kids we’d do it so I needed to get it out of the way in case I had to end the holiday early and go home. The fevers continued and I woke up the next morning with a really, really wet singlet, you know, like a drenching kind of night sweat. But my temperature had been up to 39 and I was in Bali without an air conditioner on so I had a reasonable explanation for it, didn’t I?

We did the quad bike tour the next morning, and it was heaps of fun! Riding through rice fields and caves. We had a ball. I slept pretty much all the way there and all the way back with the shivers setting in on the trip back. I took some panadol and asked the driver to drop us at Nurse Lozza’s hotel rather than ours, so I could get that Bactrim into me.

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The daughter riding an ATV for the second time in her life (living on the edge!)

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Through caves.

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That’s just me, on an ATV, with a temp of 38.3*~            *possibly not my actual temperature                                   ~never let the truth get in the way of a good story/rhyme

I was feeling very, very average by the time we arrived at Nurse Lozza’s hotel and I knew then that if the Bactrim didn’t turn things around, I’d be heading home. I mused with Lozza how ridiculous it was that I would be seeking medical attention if I was at home and would possibly be admitted to hospital, but here I was, in Bali, just casually waiting for antibiotics to come from Australia with fevers that had been going on for a week now. Back in the 90’s, a motto that my friend, Jacki, and I lived by, was “if you’re not living life on the edge, you’re taking up space”. I think it was a couple of crazy Irish lads (yes, they were the crazy ones, not us) who introduced us to it. I really felt like I was living up to that motto right about then, even though I was supposedly a much more mature woman.

I got the Bactrim in as quickly as I could, and a few hours later, I commented to Nurse Lozza that I thought I was already starting to feel better. It seemed it bit crazy that it would make a difference so quickly but I really didn’t feel like I was imagining it. No fevers and no nightsweats that night. I figured I might be cured! I emailed #bhe and asked him if he had a problem with me taking two Bactrim a day while I was in Bali (I think the actual dose for treatment of PJP is four a day but I only had 19 tablets so I needed to stretch it out). I told him I’d still been having fevers after I told him I thought I was getting better on the Bali antibiotics and that I’d had a drenching night sweat the night before. The response was swift and matter of fact, with every man and his dog copied in. “It will be your Hodgkin”. He then asked when I was returning and told the other recipients of the email that I needed to start treatment promptly upon my return so could this please be organised. He then sent an email just to me saying “are you sure you don’t want to return earlier given your symptoms???” This is just a very experienced professor of haematology who I happen to think is the best in Australia, but did I take his advice? Nope. My response was something along the lines of “I’ll give it a few more days. I’ve got definite infective symptoms and I feel like the Bactrim is working. This might be the last holiday I go on for a while. Don’t worry, I won’t be a hero/moron if I go downhill”. I’m sure there was a big shake of a professorial head back in Australia.

The next day, my temperature got to a high of 37.9. I was so excited that I didn’t crack 38. I got better each day and eventually stopped checking my temperature as I knew it was OK. There were no more night sweats. I gave it a few days and then politely let #bhe know that I was right and he was wrong. I wasn’t having B symptoms. Nurse Lozza joined me at my resort for the last week and we went on a few adventures, but mostly relaxed, had massages and really didn’t do much. One of our adventures was a lazy 23 km bike ride. We posted that on Facebook but just left out the bit about it being all down hill except for a few small hills which actually nearly killed me. I was huffing and puffing after them, I can tell you. I also noticed that I was getting a bit short of breath after walking up only one flight of stairs at the resort but I didn’t think too much of it.  My haemoglobin had probably dropped a bit more but I wasn’t acutely unwell. It’s actually easy to not realise you are sick in Bali because you really don’t have to do much other than walk down to the pool and relax on a pool lounge while your room is cleaned and food and drinks are brought to you.

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Nurse Lozza and I, on our mammoth 23 km bike ride.

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The crew. Two mums, five kids.

Since I was feeling better and I knew I was going to be OK, I decided I could let fave sis and fave cuz in on the excitement of the first week in Bali. They were not impressed, which is exactly why I didn’t say anything to them while it was happening. They told me I  was absolutely insane and my behaviour was dangerous. Probably true. They asked what would have happened if Nurse Lozza didn’t bring the Bactrim over. Well, worst case scenario is that I would have got sicker and died but I’m pretty sure I would have bailed and got back to Australia before that happened. They decided Nurse Lozza saved my life and she was happy to accept that glory.

I won’t bore you with any more Bali photos. Soon enough, the holiday came to an end but I was actually ready to go home, despite what I knew was awaiting me. A holiday on the back of school holidays with siblings who are fighters is not the best idea I’ve ever had. We had an overnight flight home on Saturday night and fortunately had the common sense to arrange a transport service to drive us home. No Skybus for this tired lot. I was naturally exhausted when I got home. I had a sleep while the kids stayed awake watching Netflix all day. They did go to sleep very early on Sunday night though.

I arrived home to my ducted not working and a flat car battery. Both were relatively easily fixed, fortunately. Again, that notion of bad things happening in threes didn’t cross my mind.

On Monday morning, I woke up and put my activewear on as I was planning to go to the gym. I dropped the kids at school and as time went on, I thought “I am kidding myself”. I felt like the warm up would be enough to make me vomit. I checked my heart rate and it was 112. I figured I really must be a bit more anaemic. I texted my awesome trainer, Emma, and apologised that I wouldn’t be coming to class. Last minute cancellers are the worst! She was, of course, very understanding. I saw my GP later that day and had some blood tests in preparation for an appointment with #bhe the following day. On Tuesday morning, before I got out of bed, I thought I might make it to gym that day. But once I got out of bed, it was apparent that wasn’t going to happen. I dropped the kids at school and went back to bed and slept for two hours. That is so not me!

That afternoon, I had an appointment with #bhe and a radiation oncologist. #bhe had worded me up in Bali that it was time to consider radiation. He wasn’t getting any arguments from me this time. I knew I didn’t have a choice and I was pretty sure I didn’t have a choice about the donor stem cell transplant, although I had a tiny glimmer of hope because in all of his emails to overseas experts, he was still saying I wasn’t keen on it. There wasn’t actually a clinic running that afternoon, like there is every Tuesday afternoon, for some unknown reason, but they’d pulled a few strings and arranged “special” appointments for me. I arrived and was first met by the lymphoma nurse. I told her I’d been feeling really tired and asked her what my haemoglobin was.  She checked and told me it was 89. That’s pretty low and I wasn’t surprised. No alarm bells were ringing. The transplant nurse then appeared and said, “let’s go”. The lymphoma nurse stood up to come with me and I said ‘Oh, are we all going?” thinking this was a bit of special treatment but I figured that since there was no official clinic on, they obviously weren’t busy and could both sit in on my appointment. Still no alarm bells. Hey, I was tired.

So I walked into the consulting room and sat on a chair that had been pushed several metres away from #bhe and he said “don’t come near me, I’m sick”. (Dude, you’re sick???). You’ve probably heard those stories where people say they haven’t heard anything in a consultation and it’s all been a blur. That’s never happened to me before, but it bloody well happened that day. I have no idea what #bhe said but the words that came out of my mouth, with a tone of absolute disbelief, were “I have myelodysplasia??” “Yes”, was the answer. Then it was something along the lines of it didn’t look like it under the microscope but it was confirmed on genetic testing. What. The. Fuck? I don’t know what came out of my mouth after that but it was something inappropriately polite.

In that moment, I felt like I had been walking along a path, minding my own business and someone came up behind me and smashed me over the head with a baseball bat. I was not expecting that, at all. There was then some discussion about treatment. I’d be having immunotherapy and radiation, the treatment that had been planned for me last year. Cyclophosphamide was off the table because you can’t give someone with myelodysplasia chemotherapy. I asked if he was sure he didn’t want to give me just a tiny bit. He was sure. The hope was that I would be in remission after radiation and immunotherapy and I would then go straight on to a donor stem cell transplant. He said if I didn’t have lymphoma, and just had myelodysplasia, he would be sending me to transplant. I don’t actually know a whole lot about myelodysplasia, but that much I knew. The transplant was now 100% unavoidable but I had to get the lymphoma into remission first.

#bhe sat back and asked if I had any questions. There was a stunned silence. I always have a million questions and I did have a million questions about treatment of my lymphoma in the absence of myelodysplasia. But since the baseball bat incident, I had nothing. My stunned silence was met with stunnedness (not a word, I know but it describes the situation) from #bhe. He couldn’t quite believe I wasn’t firing a million questions at him. As much as I know it’s gold standard practice to deliver bad news face to face, I really wished he’d let me know about this last week so I could gather my thoughts and come up with questions. I do have a million questions now, none of which I really want to know that answers too. I told him he’d I’d been tired and that I get symptomatic with anaemia and he said he wasn’t surprised because my haemoglobin had dropped quite quickly. He said they don’t usually give blood transfusions unless your haemaglobin is below 80

#bhe often says to me, “You’re a strong woman. You just take everything in your stride” I certainly wasn’t taking this news in my stride, so instead he said “do we need to offer you  some extra support given that we’ve just given you some pretty bad news?” Again, stunned since. The Lymphoma Nurse piped up and said “I’ll take her out and look after her”. #bhe then said “I’ll dictate  a letter to your GP. You don’t need to stay here and listen to this.” He usually dictates letters in front of me and sends me a copy. Somehow I don’t think I’ll be getting  copy of this one.

So I walked out and the tears flowed. I seriously could not believe it. I know shit happens but all I could think was “what the fuck have I done to deserve this?” “Why am I always on the shit end of the percentages?” Most people with HL are cured with first line treatment. If not, then most are cured with an autologous stem cell transplant. The risk of developing myelodysplasia after chemotherapy, even a lot of chemotherapy, is pretty bloody low. But here I was.

#LESSDRAMAMOREKARMA (PLEASE)

The Lymphoma Nurse and I chatted for a while about how utterly fucked up it was and how everyone had been pretty shocked and devastated when the news came through last week. She said they had discussed me in a meeting that morning, about how to proceed and that most people thought I would refuse the donor stem cell transplant because I have always been so against it. Apparently #bhe said “no, she’ll do it.” And of course he is right. I have absolutely no choice in the matter now, but there’s just that small issue of getting the lymphoma into remission first. No remission = no transplant. Given that I’ve had one remission in five years and I relapsed within two months of stopping treatment, another remission is by no means a given.

The radiation oncologist came in and complimented me on my hair. He said short hair suits me and asked when I’d cut it off. It fell out! This is growing back. Oh. Awkward. He went through his plan, potential side effects etc. I didn’t really need to listen as I’d heard it all before and it really didn’t matter. I had no choice. When I was going to have radiation last year, the planning was complicated as I’d lost some weight and didn’t have much fat around my organs. I’d lost more weight since then so it was going to complicate things a bit more. Of course. He said it would take two to three weeks to plan the radiation and it would go for four weeks, every day (Monday to Friday). He said he was confident I would be in remission after it. #bhe ever had said I should wait for the radiation to start and start immunotherapy at the same time. When I heard that wasn’t going to be for two to three weeks, I asked the Lymphoma Nurse if she go back to #bhe ever and ask if I could start the immunotherapy ASAP. I didn’t see the point in waiting. The radiation oncologist agreed that it wasn’t necessary to wait.

The Lymphoma Nurse and I chatted a bit more after he left and then I went off to have some more blood tests (including iron studies and it turns out my iron stores are really low too). So many reasons to be tired. I pulled myself together and headed home. I had to put on a brave face in front of the kids. I hadn’t even told them about the relapse and now I had quite a bit more I needed to tell them.

I saved that for Wednesday night. I just launched right into it. No way to sugar coat this! I said “You know how I had lymphoma?” Twelve year old daughter just rolls her eyes. “Well, it’s back”. Twelve year old daughter glares at me and says, “It never went away!” Wow. She gets something most adults struggle with. I told them I also now had another problem with my bone marrow that meant it wasn’t making enough blood and that made me very tired. I told them I had a lot of treatment coming up which meant I’d have to go to hospital every day for a while but that I’d try to make sure it was within school hours so I could still drop them off and pick them up. I told them that if this treatment worked and got rid of the lymphoma, I then had to do something else and that would mean I’d be in hospital for about a month. Not happy! I then had to talk about dying. Some may argue that was unnecessary but I felt like they needed to know. I told them everyone dies one day and there was a small chance I’d die soon but that I’d do my best not to and I had very clever doctors looking after me who would also do their best to make sure I didn’t die. Wide eyed glare from seven year old son. Tears and anger from seven year old daughter. Son then went back to watching Netflix and daughter asked a few pretty intelligent questions about the transplant. She asked why I didn’t have this transplant in the beginning and I said because it’s dangerous so I had to try everything else first and unfortunately nothing else has worked. She then said, “it’s just going to come back again”. Pessimistic or realistic? I’ll let you decide. I have a cancer that just has not gone away or has kept coming back for the past six years so you can’t really blame her for saying that. I then emailed the teachers to let them know about the bombshell I’d just dropped on the kids, so that they could keep an eye on them at school.

I softened the blow a bit by telling my daughter that I’d dry to take her to Paris (and my son somewhere of his choice) in the time between radiation finishing and the stem cell transplant. According to my calculations, that should conveniently fall in the school holidays. I had promised my daughter I would take her to Paris one day, so I figure I need to do it now as a bit of an insurance policy. I hope it can happen.

I’ve spent the past few days feeling really, really exhausted. My heart rate shoots up when I take a few steps and I just want to sleep. I was really hoping to get a blood transfusion this week but that would have involved spending a whole day in hospital to be reviewed, wait for a cross match, wait for the transfusion etc etc, and as stupid as it sounds, I was too bloody tired for that so I stayed home. I have to go in next week for radiation planning and to have immunotherapy so I’m hoping a blood transfusion can be arranged on one of those days and I hope it will give me a new lease on life.

I really cannot believe how quickly things have changed. I’ve gone from feeling normal, going to gym, working, and hoping to hear news that I was still in remission, and daring to believe I might be cured, to finding out that I have not one, but two cancers, feeling like crap and facing the fact that I’ll be having a very risky donor stem cell transplant within a few months (if all goes to plan!). My weight is now dropping quite quickly (nearly 2 kg in three days), I think partly because I don’t have much of an appetite and partly because there is so much inflammatory activity going on in my body that my metabolic rate is through the roof. Lymphoma does that. This is the first time that having cancer has actually made me sick. Previously it’s only been the treatment that has made me sick. I really don’t need to be losing weight heading into a transplant, so I had Macca’s for dinner tonight, but I probably should really see a dietician and take a more sensible approach.

I’ve given death a lot of thought over the past few days and all I can say is I’m not ready for it and I’m not interested in it. But I also know that no matter how strong the mind is, sometimes the body just can’t keep going. And my body is battered.

I’ll pick myself up and I’ll face this next challenge with a mixture of humour, anger, frustration, fear and swearing. I’ll have the support of family and friends and I’m going to need it. Again.

I was planning to wrap this post up with something witty but I’m too bloody tired and it’s way too bloody long. I do have this to say…………To the people who have kept in touch and continued to check in to see how things are going, no matter how infrequently, or even just thought about me, thank you. To the people who have rolled their eyes when I’ve posted or talked about cancer, and thought I was milking it, because I was in remission after all, and I looked so well, fuck you!! There’s that anger I was talking about.

And of course, I can’t do a post without giving a bit of advice……

  • Do not say it’s good that the decision about whether to do the transplant has been taken out of my hands, so I don’t have to agonise over it. That’s like saying I have the good cancer. Do not go there.
  • Do not tell me to stay positive. That hasn’t got me anywhere so far. And don’t say “you got this”. I just can’t stand that phrase.
  • If I die, do not even think about saying I lost the battle or I fought hard. Just don’t.

There should be more advice but I’ve cracked 8000 words and I need to go to sleep. I’ll save that for another post. And I apologise in advance for all the mistakes. I can’t be  bothered proof reading. Go to town, fave sis. Good night.

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That’s me, living right on the edge, not taking up any space.

 

 

 

 

12 thoughts on “If you’re not living life on the edge, you’re taking up space

  1. #fuck! We lost my step daughter to graft versus host. I wish I was smart enough to say something witty, touching or inspiring. I’m just beyond gutted for you and your kids still living on the edge. Lots of love Dr Baker Xx

  2. Fuck. That was quite a read. I suspected something was awry when we spoke the other day via text. Please forget my selfish request and don’t even think about caramel slice. Of course I want you to come and I won’t put you on my “list” if you don’t. I can’t even address all the things you’ve written I just want to scream. F U C K U CANCER. Bless you and your stubbornness. ❣️💚

  3. Hi Baker,
    That is all extremely crap.
    I’m sorry you and your family are going through this.
    I am thinking about you,
    Annette

  4. There are no words only feelings inside me that stir up when I read this and what you are having to deal with. You have two beautiful children which is why I often wonder if there is a God. So many evil people in the world and so many people who don’t care about themselves or their lives, why can’t they be the people who have to leave this life early. I’m just so sorry and sad about this. Big overseas hug and love for you

    • Thank you, Toni. I couldn’t agree more. As you know all too well, it’s just cruel when you get a little (or big) glimmer of hope and then in an instant, it’s taken away from you. Big overseas hugs right back. xx

  5. Bloody fucking cancer!! Don’t know what else to say. Thanks for sharing what’s been happening. Thinking of you and wishing and praying that all goes smoothly with your next lot of treatment xo

  6. If I was going to pick a hero it would be you. I have read every word. I wish my tears would help but I know they won’t. My prayers are with you. I hope you find a cure.

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