I had the first of my Rituximab infusions on Friday 12th August. I’ve not even had the 3-week break since last Chemo. I wonder why I go to maintenance so quickly, but I can only deduce that it must be something to do with the aggressive nature of Mantel Cell Lymphoma. I will have a Rituximab infusion once every 2 months for 3 years; it is maintenance therapy.
Saturday and Sunday are mostly packing up, sending to charity, or throwing out. Just to add a soupcon of spice to the events of life just now, the weekend has come around, and we are moving out of the apartment that has been home since December ’15. Close to 7y is the longest I’ve stayed anywhere except for my Parents’ house. Amongst many things I’ve learned of myself, and this may not be a new characteristic, I have learned that I am an undeniable hoarder. I never throw anything away…… it's shocking. In fairness and in classic deflection tactics, Kerry isnae much better. The amount of clutter in a 2-bedroom apartment is amazing, probably shocking. Not only am I a hoarder, but I am also a serial offender of buying clothes and not wearing them. There is a couple of bags of t-shirts and shirts that are still in packaging!!!!
We pack ‘stuff’ up to move into storage while the new joint is finishing. We bag ’stuff’ up to take to Charity. We chuck ‘stuff’ out that we either cannae justify taking or that we’ve been brave enough to break the tie that we have with it and can’t see the use that someone else will get with it.
A funny wee story came from that weekend. The story also has a wee word of caution for those managing a critically low immune system.
I put a few things on Facebook for people to re-purpose/ re-use. Most transactions are seamless, and it feels good for others to benefit from our need to refurnish and renew things for the new place.
The caution is that I really hurt my toe by banging it on a heavy bed headboard that was being lifted. After a week, it started to smell quite bad (ewww!). A visit to the Dr confirms it was infected. Given my inability to fight infection, this was taken very seriously, and pretty heavy antibiotics were prescribed as well as an ointment. At the time of typing (2 weeks after), it would seem that the crisis is averted, and it is settling down. Also, fortuitously, Greenwood happened to call whilst at the GP, and I put him on speaker so that the GP could tell him of my injury. Greenwood’s voice in tone, confirms I was a stupid bastard for injuring my toe and, in words, stated that if it didn’t clear up, it could easily delay the transplant; he didn’t sound at all chuffed. The reason for his call was to confirm that I need to have another procedure……I’ll get to that.
The funny story is……
The aforementioned bed is 10yrs old; it was bought when I separated. We had agreed that we would get a new bed for the new place. It was a good bed, expensive at the time, but I also felt, as is the way with these things, that it probably wouldn’t survive another dismantling/ re-assembly, so I was happy with our choice. Faced with dismantling it and disposing of it, I thought, ‘oh, I wonder if anyone could make use of it’. So, onto Facebook, it went, ‘free to anyone that could pick it up on a specific date (Sunday) and take it away.
Literally, within 30 minutes of listing it, someone had enquired and immediately asked me to de-list it for them to pick up; a time was agreed. I asked them, ‘did they want me to disassemble it prior, or did they want to see it assembled and then help with disassembly so that they could see how it went together?’. The response came, ‘just disassemble’. So, I spent the next hour or so doing just that being careful to keep all the nuts, bolts and whatever else thingos are used to hold it together, wrapping the slats up neatly etc etc. Kerry and I manhandled it onto the communal corridor of our building and waited for the door to go.
At the agreed time, the door intercom rang. Upon allowing access and the resulting delay whilst the lift brought the new owner up, I open the door and standing in front of me is a young woman who literally was about 5’1” tall of the most petite proportions. It has to be said that her English was almost certainly better than my Indonesian, but there was a lengthy exchange about “how the fuck are you going to take this away, I told you it was a 2-person job, and I’m limited in how much help I can give”. It transpires that her husband was downstairs, and the reason for him not coming up still escapes me. Upon clearing up that he was needed, he came out of the lift. I couldn’t believe it; he was, at best, 4’11” tall and significantly slighter in build than his wife. I almost burst out laughing.
Such was my need for this to be complete, I foolishly offered to help, and we duly manhandled the parts into the lift and out through the front door. Looking around, I couldn’t see a van or truck, and he pointed to his Ute in the street. For fucksake was all I could muster, luckily completely internally. I was madly contemplating whose responsibility this bed was at this point, I was satisfied that as it had been collected from my apartment, it was now theirs. I feel I could’ve just turned and fled with a wee ‘good luck’, especially after my toes that I’d dropped the headboard on, was throbbing like crazy. The good re-cycler in me decided to help load it, though. I honestly have no clue how they would’ve done it without me. Upon loading it, quite roughly, it must be said; I left them to tie it up and off I went back up to the apartment. Kerry and I had a few wee jokes about 2 such small people ad such a massive bed. About 45 minutes later, I get a message on FB messenger. ‘Mate, that’s a King Bed!’ ‘Yup’ I said. ‘It’s too big for our bedroom!!’ ‘What d’ya mean, mate’ ‘It’s too bloody big; we can’t even get it into the apartment’ ‘Oh!’ said I, wondering where this was going. I certainly wasn’t having it back, but the thoughts of what’s the protocol here did wash over me. It wasn’t long until a wee message that brought relief arrived, ‘please send the photo of it assembled' (the one I had used originally to advertise it). I duly sent it, with a ‘Good Luck’.
I mean, think about it, 2 tiny people, have agreed to pick up a King Bed that there was no danger of them manhandling themselves; and it doesn’t even fit in their apartment. No, there was not one question about dimensions, not one enquiry. I replayed over and over what the scene was at the other end. I thought it was funny as hell, even if a wee bit of a shame.
The next morning, the removalists and Kerry remove everything into the van, and we take it to storage without much ado.
After packing everything away, I head off for my usual trip up to RNSH for my weekly dressing change and one of my twice-weekly blood tests. I was absolutely buggered, breathless and literally ‘done in’. My blood test time had moved to coincide with the dressing changes to minimise trips to the hospital as we’d moved from living 7-8 mins away to now being in temporary accommodation ½ an hour away. This meant, however, that my test was late in the day. It didn’t really occur to me that this was an issue until it was.
At (about) 4:45 pm, the phone rings, and it’s the Nurse Unit Manager from the Day Treatment Unit on the phone. “Innes, your haemoglobin is critically low; we need you to present to Emergency for transfusion”. For fucksake, they want me to go to ER at this time on a Monday; we all know what happened the last time I did that. “Mate, really? The last time I did that, it was 7 hours before I got the treatment I needed; I’m due in there at 8:00 am, can’t we just wait and do it then?’ “Innes, I’m not really that happy with that, your Hgb is incredibly low” “Ok mate, let’s be real, I’m at home, safe, no real symptoms, not going anywhere, what’s the difference between waiting for 15h here or 7h in the ER?” We agreed that if I were to develop any symptoms of breathlessness, light-headedness etc, I would call 000, and definitely NOT drive myself to ER. The night passed without incident, although I did feel properly shite.
On Tuesday, I present to the Apheresis Unit within the Centre for Shite Hair for my Stem Cell Harvest. As instructed, I had loose clothes on, well, Jeans and a T-shirt. The Snr nurse in charge said she’d heard about my Hgb and asked me to lower my mask. She took one look and announced, “there’s no way you are ready for this today, Innes, no way”. She was looking at my lips and could tell immediately that I wasn’t ready. So, the plan was discussed. I would have a day of transfusions of both Packed Red Blood Cells (PRBC) and Platelets; I would go home and rest on Wednesday and present on Thursday for Harvest, subject to my blood having recovered sufficiently. The day passed without much incident. I got to know the specialist nurses who do the Apheresis procedure(s), and they were lovely. There was a lot of laughter and joking, and getting to know them helped ease me a little after things had not really been going according to plan.
Wednesday was uneventful. I rested, did some work, slept, and rested more in the tiny wee serviced apartment that is now home for a few weeks.
I head off to the hospital on Thursday in my new ‘loose pants’ that I was told to get. My blood was taken as a preliminary test, and the results came back that my Hgb was still not satisfactory. For fucksake, how come I’m getting all this blood, and it's not coming back up? A quick conversation informed me of a new plan and helped me understand, through my new-found friendship with the nurses, that, my blood is fucked, basically. I shouldn’t be too concerned; it’s just the aggressive nature of the chemo, and it’s taking a while to correct. At the risk of being melodramatic, being told your blood is fucked is kind of concerning, even though I knew that was the case from what I'd gleaned previously.
The new plan was, that I would get even more transfusions that day. Then at 5:00 pm, I would get the BIG INJECTION, and I would start Apheresis regardless first thing on Friday morning.
There was another, older, much more gentlemanly patient there at the same time. It turned out the plan for him was the same, the BIG INJECTION. However, as he didn’t need transfusions, he choofed off to return later in the day, close to 5:00 pm.
In the hours that passed, I asked and then googled about the BIG INJECTION. It was described that the injections I had been having for the previous 10 days hadn’t worked in that there were not enough stem cells in my blood. That the stem cells were ‘probably’ there but still in my bone marrow and that the BIG INJECTION would help them leach out. I asked why the BIG INJECTION wasn’t just used in the first place. I was told that it didn’t, in and of itself, make the stem cell production happen, that was the other injections, that this would help them leach out. I was still confused, and then I was told that each BIG INJECTION costs (close to) AU$10k and I was to get 2!!!! The BIG INJECTION is called Plerixafor.
Now, the BIG INJECTION has some side effects. I really dislike talking about some biological functions; I really do. But let’s just say, the side effects were profound. Luckily, I was able to time things and get back to the apartment without much discomfort. An eventful evening ensued, along with a night of decent but interrupted sleep.
I’ll wrap this up here. Although remember a couple of things…. loose trousers and side effects. I’ll make a blog post about the harvest as it was eventful and interesting. Oh! The procedure that Greenwood called about?!?!?
As I had some Lymphoma in my Bone Marrow, I need to have a second Bone Marrow Biopsy – FUCK!!!! Whilst I am considered in remission from my PET Scan, I need to have it confirmed that the Lymphoma in my Bone Marrow has gone too. I think I heard him say that, in all likelihood, it will have, but they need to be sure.
I hated the bone marrow biopsy at diagnosis. It was painful as all buggery, and it seemed to take forever.
As I close this off, it's Sunday Afternoon/ Evening, and I am already focused on that Biopsy on Monday at 9:15 am. I am really not looking forward to it, but it needs to be done. That Green Whistle and I will be mates tomorrow morning for sure; I am hoping deep down that it works better than last time.
Wish me luck.