It’s complicated

So, when we last left Caroline on Wednesday, she had been admitted to C6 with a temperature that she’d had that day, and also severe abdominal pain from her enlarged spleen. She spiked a temperature a few more times, and after a chest x-ray and CT Scan it’s been discovered she has a small infection on the bottom of her left lung. She is on IV antibiotics to control the infection, and according to the scans it doesn’t seem to be spreading. It at first wasn’t known whether the lung was infected, or had partially collapsed due the pressure of the spleen pushing on it. Either way, C is having some difficultly breathing, because the spleen is splitting her diaphragm, making deep breaths incredibly painful. She is on oxygen to keep her oxygen saturation levels up, and to ensure air is getting to all parts of her lungs.

The enlarged spleen is also making it incredibly painful for Caroline to do anything except lie down. They have been trying a number of pain medications to get it under control, but none have been particularly effective. I think they have reverted back to oxycontin because it is effective, but C hates that it makes her drowsy. Everything is a trade off in this situation.

The endoscopy from Tuesday revealed that C has no signs of grafts versus host disease, which is disappointing, especially has she had to endure some rather hideous vomiting and diarrhea sessions. At one stage she passed blood, but the gastro guys were called in and said it’s probably a result of the biopsy of her stomach and upper abdomen causing a bit of bleeding. Mmkay. Let’s go with that.

As you can tell, I’m a bit sketchy on the details. I have no idea what antibiotics C is on, nor how many bags of platelets she’s been given. This time around C’s hospital trip has done me in. It’s not helped by the fact that we had to get the doctors to fill in some forms say that C has less than 12 months to live (they actually wrote weeks to months) so that we can access her superannuation. If you want to know what it feels like to have someone reach into you chest and rip your heart to pieces, try reading those words about someone you love. I made the mistake of reading them in C’s room when she was out having a scan, which isn’t wise. But, when C told Michelle, that I had read the forms and was upset, Michelle rang me at home at about 7:30pm on a Friday night to see how I was and if I had any questions. That is pure class. Anyway,the upshot is no-one is giving up hope. Not us. Not the doctors.

Today C sounded a bit perkier than she has a few days. I slept until 1pm – which I never do but obviously needed – because I’m feeling better as well.

And now I am off to the hospital to see my girl. x

 

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An update on an update

So, after I posted the last blog I did go and lie next to Caroline in bed. After a while I noticed that she felt a bit hot so I took her temp. 38.4. We monitored it for 40 minutes and it hovered slightly over 38. The danger sign that infection might be setting in.

C called the hospital and we arrived there about 5pm. C was admitted to emergency and given fluids and antiobiotics. after a chat with doc Michelle it was decided to admit C for the night, especially as she has to be back there anyway at 8am. The good news is that C’s temp has dropped back into the normal range. She’s has a chest X-rays and swabs and bloods taken so if there is an infection we should know what it is soon.

C was angry but resigned to having to drive back to hospital this afternoon, but it’s better to be safe than sorry.

The Spleen

Caroline came home early yesterday evening after a night at the Royal Adelaide Hospital. She was given a bag of platelets and four bags of blood during that time, but it doesn’t seem to have perked her up the way previous blood transfusions have. C was also given IV fluids which seems to help with the nausea. But, she is still in bed now (2pm) which is highly unusual, even though she has written her final editor’s letter from between the sheets.

The main issue – apart from debilitation fatigue – is that C now has an enlarged spleen. It was actually the source of her shoulder pain, which we wrongly thought was a pinched nerve – and is cause a great deal of uncomfortableness in her abdomen, as the spleen is pushing on other organs, including her lungs. This makes deep breathing painful. You can feel the spleen – the left side of C’s belly is very firm to the touch. Now, I don’t know much about the spleen and at this stage I kind of want to pretend that this isn’t happening and bury my head in the sand, but apparently the spleen enlarges because the abnormal blast cells have accumulated in it. So, obviously, there are still blasts in the blood. We don’t currently at what level they are at. Unfortunately there is little that can be done about reducing the swelling, although have put C on some medication used for gout, I guess to reduce the toxins in her body, including the spleen.

Tomorrow we have an early start. C has to have an endoscopy and biopsy of her small intestine and try and determine the source of the nausea. In order to for this to happen safely, her platelet level has to be above 50. It’s currently around 10. So we have be be at the hospital by 8am for a blood test, the a platelet transfusion at 9:30, and the the biopsy at 1pm. It will be a long and tiring day for C.

That’s all I know at this stage. I wasn’t there when doctor Michelle was talking with C, but this new turn of events is making C uncomfortable and upset. She can’t stand that fact there is now pain associated with the cancer, and she says she feels like an infirm. It’s shit to watch, and to not really able to do much in the way of making this any better. I just poked my head in before and C is lying down now. I may just go and join her. x

 

 

In the wars

This is just a quick update to let you know that Caroline is in hospital for a night. Maybe two. She’s been feeling nauseous and totally exhausted since Friday and it was getting progressively worse as the days went on. Her general high-grade blahness was exacerbated by her doing something to her shoulder Friday night that caused her immense pain. Anyway. This morning she was really unwell. So unwell that when I asked her to call her doctor, she did. And when the doc she should come into the hospital, she agreed. And when I said I was packing her an overnight bag she didnt protest that it would be unnecessary. And, when we were leaving, she didn’t insist she take her laptop. That’s how unwell she was.

We arrived at the hospital around 10.30.and C was seen by a doctor in the oncologist day centre. We waited around for bloods to be taken – it was busy in there today – and once bloods we taken we made our way downstairs to ward C6 so C could sleep on a couch in the patient lounge because she was too tired to hang around in a chair to hear the results.

Being in C6 was weirdly ok. The nurses would stick their heads and and say hi, and just being there relieved my anxiety about C spiralling downward quite quickly.

It was decided that C should stay tonight to have fluids and probably blood products, as well as an endoscopy and biopsy to see what’s happening in her stomach and upper abdomen. It could be the start of Graft Versus Host Disease, in which case the doctors want to get on top of it quickly.

C still hasn’t been allocated a bed yet. I know the ward had to find six beds this afternoon for patients including C, so it’s a juggling act.

I haven’t heard the results of C’s blood tests yet but I spoke to her and she is doing ok and is.comfortable.in the patient lounge. I’ll write more when I know more. X

Sorry. What did you say?

The weekly appointments we’ve had with Caroline’s registrar Michelle have, to be frank, sucked a rather large fatty recently: there never seemed to be any good news, treatments weren’t working the way they should, and the ultimate aim of complete remission and cure was ripped from us only last week. So it’s generally with a heavy heart and a decent bottle of wine waiting for us at home that we approach these Wednesday afternoon appointments.

You can imagine it was a bit of a surprise then that we didn’t leave Michelle’s office wanting to cry ourselves a river. Or drink the equivalent in wine. As it happens, something actually appears to be doing what it should. Perhaps that chemo Caroline had last week – the Azacitidine – is doing its thing. Perhaps there is some graft versus tumor going on that we don’t know about (because there sure as shit isn’t any graft versus host disease going on). Whatever it is – the doctors don’t know and I don’t care as long as it keeps happening – is that the blasts in Caroline’s blood are on a slight downward trend. They went from 1.7 to 1.8 but then dropped down to 1.4 according to the last blood tests. The changes aren’t huge, but a drop is better than a rise, and it shows that, for the minute, Caroline’s leukemia is at least being controlled.

Given that C is still doing well – her liver and kidneys are fine and although her platelets are low, this can be managed with regular transfusions – the doctors are planning another Donor Lymphocyte Infusion in two weeks time. This is again to try and promote a graft versus host disease response in C. Christian doesn’t have to donate again as they kept some of his last collection on ice.

In other news, Caroline resigned from her editor’s post and she finishes up on Monday. She is upset at this because she loved – indeed loves – magazines, and Barossa Living was in many respects her dream job. However, she noticed that she was, despite herself, starting to resent the time she was spending on it when she would rather have been doing other things. The company she worked for have been amazing and would have done anything, I think, to accommodate her needs, but it was time to go.

Um, not much else is happening. C is tired a lot more than usual and sometimes feels nauseous for no apparent reason. Her hair is longer than peach fuzz but shorter than her pubes, which have grown back (you’re welcome) and she is rocking some very cool beanies.

 

The worst of times

I want to preface this post by saying it’s not an easy read. But also that Caroline and I are still hopeful that something might work to kick the leukemia’s arse. The odds of that happening are becoming less and less, but where there is life and love, there is hope. Even the doctors have some hope. However, at the same time we have to be realistic.

In respect to that, Caroline resigned from the editorship of her beloved magazine today. Despite the company being unbelievably supportive and accommodating, C and I talked and decided that we wanted to focus wholly on living our life without having to worry about deadlines.

So.

We saw Caroline’s lovely registrar, Michelle, yesterday at the hospital as part of C’s weekly check-up. This is what we learnt:

– Caroline’s leukemia is active and she now has blasts in her blood. The blasts rose from 0.2% to 1.7% in four days.

– The chemotherapy she is on now has a much tougher job of controlling the leukemia long enough for the graft versus host disease to kick in, if it does at all.

– Caroline’s platelet and white and red cell counts are dropping to very low levels and she will soon be requiring more regular transfusions.

– Some doctors do tear up when delivering bad news.

– Doctors really do use the phrase ‘get your affairs in order’

– Most people who have leukemia die of an infection.

– If things keep going they way they are currently, with no real effect from the chemo and no graft versus host disease, Caroline has a few months to live. Many months, whatever that means, is the best-case scenario. If C gets an infection anytime soon, it could be weeks.

– There are no words to describe the devastation we are both feeling.

I am sorry to deliver the news like this. But I’m not sure how to make any of this seem softer or nicer or gentler, because it is brutal.

Day +86

Caroline received a phone call at about 8 0’clock last night. It was Michelle, the registrar from the hospital. Kellie, our niece who was visiting for dinner, looked slightly alarmed and turned to me and asked if it was normal to receive phone calls from doctors so late. I guess for most people the answer is probably no, but for us, it’s almost routine. We don’t expect it to be bad news, and so it doesn’t create great anxiety in us anymore. Or perhaps, because most of our waking hours these are filled with a level of anxiety, we no longer register that feeling as anything new.

Anyway, Michelle was ringing with the good news that the hospital committee had agreed with the application to fund Caroline’s new chemotherapy drug Azacitidine. That decision has saved us $21,000 and given us a bit more hope that Caroline’s leukemia can be kept under control for as long as it takes for the graft versus host disease to kick in, if it kicks in at all. The doctors remain optimistic that the drug will buy us that time. Which is what we seem to be doing these days. Buying time. The word cure isn’t thrown around by anyone anymore, and occasionally you’ll hear the phrase disease-free survival, but mostly it seems now to be about disease management. C and I are still hopeful that we have a lot more time left together, but the reality is that we aren’t as optimistic as we were when she first started treatment. So we now have conversations about what we’d like to do with the time that might be left. I now know, after having talked with her, what sort of coffin C would like. To describe what these conversations feel like is to take you a level of hell that you don’t need to visit before you absolutely have to, so I will spare you the pain.

Also, we heard the other day that a couple of patients on the ward had gone in for a stem cell transplant having actually no signs of active leukemia in their body, but a strong chance of relapse. They had a matched donor, and yet they died from the side effects of the graft versus host disease. It’s such an unforgiving cancer, and I wonder what the graft versus host disease, if it happens, will do to Caroline. 

Physically, C is still relatively well. She tires a bit more easily now, and her blood counts have dropped so she is once again having to have platelet and haemoglobin transfusions. Emotionally, there are many more tears, from both of us.

As you can probably tell, I’m not in the best of moods today. C and I generally manage to live our lives as normally and positively as possible, but some days the reality creeps up and punches you in the face. I don’t want to spend my time imagining what a life without Caroline will be like. But I do. Not all of it, but some. And while I’m grateful that Caroline starts her new chemo on Monday, I don’t go into this round with the same resolute spirit I have with other rounds. I have not given up on something miraculous happening, but I am aware that hope sadly doesn’t equal results. And my heart is sorer for that today. But ask me tomorrow and I may feel differently, because nothing in cancer land stays the same for long.

Another day, another transfusion.

Another day, another transfusion.