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justinsdaysinthedark · 5 years

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Post # 6 - It is what it is

I'd be lying if I said I haven't spent the past half an hour with tears flowing from my eyes staring at a blank screen wondering how I'm going to get everything I've got floating in my head out. I suppose listening to Coldplay live in Argentina probably wasn't the best choice of music to set the mood. I'll work on that one in the future...

Where do I start? It's been a question I'm often asking myself at the start of these blog posts and it's certainly not the easiest one. What do you guys know? There's been so much happen since my last post on Thursday night.

Friday July 26th: I saw my doctors around lunchtime who came in quite concerned. Whilst they were confident my lymphoma was one called DLBCL (Diffuse Large B- Cell Lymphoma), some tests had come back with suspect results that it could be a more aggressive and harsh type of lymphoma called Burkitt's lymphoma and if confirmed, chemo was starting that night with no time to waste. There was also one marked in the middle (a cross of the two) called Burkitt's Like Lymphoma which is treated similarly to DLBCL. Whatever it was, I couldn't change it. I just wanted answers and if treatment needed to start, let's get it underway!

Adam, my incredible haematology doctor sent off another test of my gall bladder to finally get the confirmation I was after. It was urgent. He had to know. It was reassuring of Adam to state "Justin, we need to know what this is. Preliminary results are due back later this afternoon and that will hopefully rule out Burkitt's. if it is Burkitt's, we'll start chemo tonight and I'll be with you every step of the way - even if I have to stay back a few hours."

I know doctors earn a fair coin on a lazy day, but how many give you that much confidence that you and your health is important to them? I'm going to have it a guess and say not many but alas, I am so incredibly lucky with the team of doctors I have.

4:00pm and Adam strolls in the door heading straight for my room. My heart drops, similarly to what it had when Michael dropped the news I had lymphoma. "Good news. Preliminary results are back and we're confident it's not Burkitt's. You can't rule out anything in life, so there still is a small chance it could be. We're happy to wait for the final results on Monday, figure out a treatment plan from there and start Chemotherapy next week. Spend Saturday and Sunday on day leave and I'll see you next week."

This was news to my ears. In a time of what has been negative or no news, I could spend the weekend with family relatively freely and forget everything was happening for a few hours each day. My Uncle Bob and Aunty Denise were down from Tasmania to see me, as was my Aunty AJ and cousins from Bairnsdale so it all felt like it fit into place.

Friday night saw me considerably more relaxed with this news...that was until Collingwood started and it was the demolition it was. Slightly humorous side note, the nurse came in around 9pm for my nightly observations. Naturally, my heart rate was up a bit more than normal watching the football (118BPM - normally between 70-85BPM). This caused the nurse to call in the team of doctors who wanted to put me on an ECG machine for the night and monitor my heart. I assured them it was because Collingwood were on and if they gave me an hour, I'd be okay. It took some convincing, but it finally worked. Back they came an hour later and it had gone down - crisis averted.

Saturday afternoon and evening was wonderful. I went down to dads for dinner and was fortunate enough to spend some much needed time with family over a beautiful dinner and good laugh.

Sunday was much the same. I went home, mum did a fair chunk of washing for me as I spent it being me. Seeing Courtney, napping in my own bed and even headed over to Fountain Gate and got some much needed new clothes and other miscellaneous items - something that seems so simple but is such a luxury when you've spent the past 15 days in hospital.

Monday July 29th: They say the more you think positively, the more positive news you shall receive....or it goes something like that right? I woke up this morning the most upbeat and best I'd felt in weeks. I felt fine. I felt no pain, almost like I'd woken up from a shitty hotel! In all honesty, I felt like I'm abusing the system however I keep being quickly reminded how much I need to be here. Did I wake up so positive because I lived my old life for 16 hours over the weekend? Is it because I was hoping to hear a reasonably positive outcome with this lymphoma test? Probably a mix of both if I'm honest. But whatever it was, I was hopeful.

Adam came around at roughly 10:00am. Didn't really have much for me in terms of news but more of an outline of the day. If they hear the results of the test they were waiting on, they'd write me up a treatment plan ASAP and get chemo started this afternoon. At worst, I'd be starting it tomorrow (Tuesday). They just needed that definitive answer of what type of lymphoma I have - an answer I'd love more than anybody.

Either way, we agreed i'd need a PICC (Peripherally Inserted Central Catheter) line in which basically is a long-term cannula. It runs from the inside of my arm right up and around and stops basically just outside my heart. This is for easy access for the chemotherapy and even an easy exit for blood tests - something that's proven incredibly difficult to take from me over the past few days. Additionally, these lines can last up to six months verses the three days you get from a cannula. There were too many positives to say no to!

This wasn't scheduled for any time in particular, so 1:00pm came around and I was about to be taken to get the PICC line in.

Just as I was about to leave, Adam came in with a few words I'm all too familiar with. "Well, the pathology tests we were waiting on have come back inconclusive..."

Woah. Wait. What? How do tests of my gall bladder that was removed six days ago come back inconclusive? How does one of the main sources not have enough 'data' to tell them what sort of lymphoma I have? I was just stunned.

Adam continued "As a result, we can see some signs of Burkitt's lymphoma and that's what we're going to treat you for. You're young. You should be able to handle it and it's better to over treat you than under treat and be stuck where we are at the moment. It's an intense 16-day chemo treatment that will totally wipe out your red and white blood cells as well as your platelets. We foresee you being in here for another 3-5 weeks, depending on how well your body goes getting these levels back up to normal post this first treatment..."

I honestly say this but that's all I remember from this conversation. I was hoping I'd be heading home this week but looks like that definitely won't be happening. Today marks day 40 of the past 55 days in hospital (day 15 of this stint) and if I go off the longest suggested time expected, I have another 35 days to go. That honestly crushed me.

I got taken down to get my PICC line in - quite an easy process. Very similar to putting in a larger cannula, just a whole lot longer and uses local anaesthetic as well as being guided by an ultrasound and X-ray. I'm lucky enough to have two ports, which will hopefully speed up some of my medication and how much they can pump in. Does it feel weird? The only weird part was feeling it slide down past and near my heart - but that's okay now!

By the time I return, dad made his was in to try and help process the news. We get Adam in to once again explain the process. In layman's terms, I'll be starting an intense and high-dose 16-day chemotherapy program kicking off tomorrow (Tuesday) morning. Most of the time across the next 16 days, I'll be hooked up via IV drip getting whatever medication is required. I think I saw I have rest days on days 7 & 8 which I suppose will give me two days to look forward to. At the end of the day, it's something I'm not certain on and will be a day by day process and constant learning about what's going into my body to help fight with me.

I do have one request for you all. With my body not producing red or white blood cells or platelets over the next few weeks, I do request if you are planning to visit however are sick to stay away those extra few days. With my immune system going to be at the lowest it's been, I don't particularly want to pick up something I don't need. Additionally, as much as I'd love flowers, they're also banned due to the infection risk of the spores mixing with the chemotherapy and causing some dangerous damage from the inside.

At the end of the day, if you're not sure please message me and check as I'm not entirely sure myself about everything. I'm constantly learning as I'm going.

How am I feeling? I'm nervous. I'm nervous at the unknown. How will this affect me? How bad am I going to feel? Will I lose my hair? What will my energy levels be like? In advance, I do apologise if over the next few weeks I'm not myself. Truth be told, that's because I probably won't be.

In a way, i'm finally excited to start my treatment first thing tomorrow morning (after yet ANOTHER lumbar puncture). I was so envious of both people next to me getting their first rounds of chemo today. I know mine will be intense but I just can't wait.

I've learnt so much about cancer and chemotherapy over the past four days and I know there's so much more to learn. Today I learnt I'll be incredibly highly cytotoxic, which basically means all needles and anything used on me need to go in a separate bin just for me. Additionally, I'll have to get used to the good old double flush after the toilet to ensure all waste is disposed of. Mouth ulcers are a big issue with most chemo patients as well. I'll have to start brushing my teeth after every meal and taking a special mouthwash 3x daily to assist with keeping these under control. There's plenty of other little things, but they're two I least expected.

Everything really hit me last night....not like it did tonight though. I just had twenty minutes to reflect and it just became a sudden realisation. What I'm going through is real. It's not a 'joke' anymore. It's not something they're looking at as a potential cause. It is the cause. I have a legitimate medical issue and it's finally time to fight lymphoma. All well and good to be talking the talk like I have been - it's now time to walk the walk. This sits well with me. If I give somebody my word, I do whatever I can to get it achieved. Unfortunately for the lymphoma throughout my body I've given it my word and it's time to fight it. Round one begins tomorrow morning.

I leave tonight feeling a whole lot better than I did when I started tonight's post. I didn't learn from my words earlier as Coldplay live from Argentina is still playing however I'm in a much more comfortable mind space.

My best friend of a lazy 20 years, Dylan visited tonight with his partner, Jacqui. One phrase popped up more than most and they made me aware it was a common phrase coming out of my mouth.

"It is what it is."

I can't control what's happened to me as "it is what it is." What I can control from here though is how I fight lymphoma. Thanks for the visit tonight guys, I appreciated the two hours spent here in what's been an incredibly tough afternoon.

Much love.

Juzz xx

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