The end is nigh

Saturday, 1st October, 2016

We are counting the hours now. That is the amount of time that Dr SD has given N to live. This follows blood reports coming in that show N's WBC counts exceeding 99.28 billion cells per Litre, a creatinine level of 2.43 and potassium level of 7.6 mMol/L. She has no infection, the blood culture report was clean. The leukocyte count is purely the cytokine response due to metastasis.

Anyway, we have put N on a 5% dextrose drip with 10 units of insulin to control the potassium levels. The creatinine is not that worrisome. N does show signs of kidney failure, though, which was probably brought on due to dehydration.

There is nothing we can do for the inflammatory response, that I can think of. It has not been caused due to an infection, or we could use antibiotics. Corticosteroids is an option, but hasn't been used much in end of life treatment from what I have read. Neither did any of the doctors suggest it. I re-read parts of my old immunology textbook to find it very lacking. It limits itself to infection, not to the pathway as such, so was not of much use to me.

It is sad that the awareness about the inflammatory response in cancer is lacking amongst medical practitioners in India. Perhaps targeting that pathway could have helped N. I regret not using the ayurvedic medicines now. Many were targeting that pathway.

However, I can see much headway being made in cancer medicine, which should help millions fighting against this terrible disease in the near future. It is sad that N will not be there to make any use of it.

I can see N's temperature going down steadily. It is now 96 F.

It is a waiting game now.

Crash and (not) burn!

What an eventful few days, ranging from heart-stopping agony to pure relief, and hopefully, a degree of recovery.

N's oral intake has been consistently reducing over the last 3 days, leading to reduced urine output, lowering blood pressure and visibly increasing discomfort. Our GP has basically recommended that we let N die, as painlessly as possible, giving her water when she asks for it, and not forcing any intake. This has, unsurprisingly led to dehydration, and its consequences at 4:00 AM on 28th September were scary.

We were urgently called to N's room by my uncle who had been woken by the nurse. N was exceedingly uncomfortable, seemed in agony and was breathing volubly and oddly. Her oxygen saturation was scarily low at 81. We called up my cousin, a doctor, currently living in the US, and he suggested we rush her to the hospital. This idea was immediately dismissed as it could mean that N would lose her life in an impersonal ICU with no one at her side. Taking the risk into consideration, a further patch of fentanyl was applied to at least ease her pain, and the backrest of the bed raised.

While N's children (my mother and uncle) sat by N, perhaps seeing her off for the last time, I rushed, along with my brother to a 24 hour chemist to procure an oxygen cylinder. It was impossible to get a proper sized one as most medical equipment stores were closed, so I returned with a refillable 1000 mL cylinder that could at most be deliver 0.5 L of oxygen per hour. Happily by the time we got back, N was enormously better, with her change in position (and perhaps eased pain?) bringing her oxygen back up to 97.

When the world woke up, we ordered a full sized cylinder, and returned the tiny thing that we had bought. It is now on stand-by, should the need arise.

Come afternoon, we were visited by a pain specialist, who does house calls and works in palliative care. Dr SD felt that N need not be left to die, and that hope was not lost. He suggested (much to my mother's disgust), that a naso-gastric feeding tube be inserted to give N some much needed nutrition. She agreed after being reassured that it would not cause her pain. However, he also felt that this could be done only after she is stabilised and her mouth, now infected, be treated. He suggested we have an IV line inserted in the mean time, a task that proved rather difficult for our nurse due to the dehydration.

What followed was an adventure to a nearby charitable hospital whose staff exceeded themselves in helping us. An experienced nurse attached to the hospital came over, after her shift ended to help us with N, completely out of the goodness of her heart. Faith in humanity was restored!

N is currently in repose. She did not like getting an IV line, and we would have respected her decision if her electrolyte imbalance were not interfering with her decision making abilities. Dr SD feels that N would probably stop needing the IV line in 2-5 days. Let's hope that she can have her nutrition orally by then.

A scare, regrets, things done and things to do...

24th September, 2016

N is very groggy. Liquid intake has gone down but urine output, pulse, oxygen saturation and blood pressure are tolerably okay. Some parameters could be better, but nothing is alarming. As night approaches, N gets a fever and we contact our GP. He tells us he'll try to meet us later. He comes over at about 11:00 PM, reads her reports once more, reiterates that things are very bad, and all that we can do is provide pain relief till the end. He suggests we use paracetamol and use sponging to bring down the fever when as required. He gives us a phone number of a pain specialist before leaving.

25th September, 2016

Early hours
The fever does not reduce in spite of the paracetamol given to her earlier. It is now over 102 F. Worse, her limbs are cold. On taking a quick look online, the symptoms that we see seem to be consistent with what one expects to observe during the final week of life according to cancer.gov. I wish physicians had explained to us what to expect. We really expected N to have more time. A lot of the alternatives that I had planned would not be implementable within this suddenly reduced time frame. I can only thank the makers of the internet, organisations like the NHS, NIH etc. who make use of the "information highway"for the dissemination of information for all that I have gathered so that I even have an idea of what is going on without needing to purchase obscure and expensive medical texts.

Here are the symptoms, as observed in N:

• Decreased consciousness: N sleeps a lot more than she did, becomes irritable when woken (if she wakes)
• Decreased performance status: A vague criteria, but her oxygen saturation levels have been decreasing steadily from about 96+ to about 93. She seems more frail and needs much more support from others to even make her turn over in bed.
• Difficulty in swallowing liquids: N has reduced her nutrient intake drastically. We used to give her albumin in milk and coconut water, but she seems to find it difficult to swallow it, and often spits it out. 

This brings forth a lot of self-recrimination and regret:

• Why did we not seek a second opinion as soon as the cancer was detected once again, especially from an oncologist? It is obvious that an oncologist would have studied the problem in more depth and that we could have started a chemotherapy regimen rather than going in for surgery.
• Why did we not question the treatment process every step in the way? There were so many points where we could have not only detected that the cancer had metastasised, but also started treatment while N was relatively healthy.
• Why did we wait nearly two weeks before we decided that Dr P did not know what he was talking about -- that impacted stool as a diagnosis was not only absurd but an insult to every one's intelligence? We deferred to Dr P's judgement over our own. This is dangerous. A doctor's knowledge is not infallible and it is our duty to stand up to ridiculous ideas.
• Why did we allow Dr P2 to continue his negative pressure wound therapy when we could have used KCI's services (which we did switch to finally, and which are indubitably superior)? It is sad indeed when one gets better service from a technician than a plastic surgeon, even when the latter believes himself to be morally superior.
• Why did we not look more actively for specialists who could treat N at home?

Anyway, I digress. The difficulty in swallowing makes ingesting paracetamol tablets difficult and the fever levels are worrying. We therefore decide to inject it intra muscularly, which involves a trip to a 24 hours pharmacy to procure the drug and syringes. About half an hour later, the paracetamol has done its job, and the fever begins to reduce. Oddly enough we realise the fact by the warming up of N's limbs! Feeling relieved, we can now leave N in her nurse's care, who has been exemplary.

The Day

N's fever is now in control, more or less. The day passes without incident and with a couple of visitors. N sees them, is gracious, and suggests they go sit out with us and have tea -- a polite dismissal from a tired N. N also has a Skype call. Intake very limited once again. Does not need paracetamol.

Night passes without incident, though the nurse suggests that we get ourselves a Fowler bed for N. It would aid her in sitting up, and thus allow us to persuade her to drink without straining her as much. Will mobilise it in the morning.

26th September, 2016

Contacted a start-up that hires out medical equipment for the Fowler bed which is delivered in the evening and set up by night time. It also has an IV stand which is currently not in use. Have also initiated the process to procure an air mattress. 

Am contacted by Datar genetics in the afternoon. They apparently do whole gene expression profiling, and identify dtysfunctioning pathways using the KEGG database. They use a Thermo-Fischer platform. I was unaware that they are also in this space as I had heard of only the Illumina and Affymetrix platforms. I rather like the services that Datar offer, though it is a bit expensive (Rs 240000). The crux is however that it will take about 3 weeks to get the report. This might be too late for N. I have written back and stated that if the results can be expedited, I'd be game, or if the raw data could be made available within a couple of days as I could undertake the analysis myself (I have some experience with interpreting gene expression profiles). I'd get the age-sex matched controls' data from published papers. Did I mention how much I like open science and the internet that makes it all possible? Anyway, all that is subject to whether they can expedite the process. Otherwise, the point is moot.

Some drama again today. N's fever shot up once again to over 102 F, and oral paracetamol was not an option. The day nurse is not as competent as our night nurse and needed prodding to inject her with paracetamol, which she did with a degree of muttering. 

By the time the shift changed, the fever was going down. At 9 PM we shifted N onto the Fowler bed, after which we had our dinner. N's Fentanyl was also upped to 75 micrograms by this time due to her pain, which is disappointing. We will have to get some more patches, as we have only two more 25 microgram patches left. I hate the paperwork, and they never issue more than 6, so I'll have to visit that horrible hospital again (hopefully -- I'd rather not think of the alternative) for a prescription and a refill even though I'd rather never see the face of N's doctor ever again. 

There has been some good news too, though, N's fever came down to normal by 11:00 PM. That is a relief, as it is the first time after the 24th that it has reduced to this level. I wonder if the fever reduction could be correlated to N's comfort level in terms of the bed and the increase in Fentanyl dosage. She seems more alert than she has in the last three days. Suddenly there is hope again. 

We will be contacting the pain specialist first thing in the morning tomorrow. Hopefully he could save us a degree of bother by arranging for Fentanyl himself...here's to wishful thinking!