Weeks 228 & 229: Hospital, home or hospice?

Written by Lars Haakon Soraas

Weeks 228 and 229 in the war on lung cancer have passed. Here are the highlights:

  • As those who follow our updates will know, Dyanne was, due to shortness of breath and low platelets (thrombocytes), admitted to a local hospital here in Oslo on 25th December. The hospital initially only offered palliative care for these symptoms. After a bit back and forth, they eventually agreed to give Dyanne chemo which hopefully both could relieve symptoms and, importantly, also kill some cancer cells. On 30th December Dyanne thus got an infusion of a low dose (75 mg/m2) of a chemo drug called irinotecan.
  • The main symptoms Dyanne has had the past few weeks are shortness of breath, cough and backpain. Prior to the chemo, all of these seemed to just get worse. Following the first chemo infusion, and also the second chemo infusion (Monday 6th January), we believe things have improved a bit. At least the symptoms seem to have stopped getting worse, and, we think, they have actually improved a bit.
  • We can’t be sure if it is the irinotecan that has caused the improvement, or if we (with the help of the hospital) have gotten better at managing the symptoms. Has the cough gotten better because of irinotecan? Or because we have changed the frequency of codeine, a drug Dyanne is taking and which helps against the cough? And has the back pain gone away because of irinotecan? Or because the radiation she had before Christmas finally is having an effect? Or because we have increased the dose of Reltebon depot (oxycontin)? Or maybe the back pain was, contrary to what we thought, not due to a bone metastasis, but due to a muscle issue. And maybe this muscle pain has resolved after Dyanne started moving around a bit more? Who knows… In cancer, easy and simple answers seem rare.
  • Another problem also developed while Dyanne was in hospital: problems swallowing, in particular problems with drinking water. This is as a new problem to us, but apparently one that is common among many older people and also late stage cancer patients. What seems to happen is that when she tries to drink water, it ends up in the windpipe and this triggers an uncomfortable cough (the last thing we need…). As with several other of Dyanne’s ailments, the cause is not really known. And no one (except for us, that is) seem keen to find out the root cause and treat that. Instead remedies for how to live with this problem are offered: add thickening powder to the water, use a straw, etc. We still haven’t gotten to the bottom of the swallowing issue (aka dysphagia), and we are still not good enough to manage it to not care about the cause. One hypothesis we are looking into is whether the issue is caused by the opiates Dyanne is taking.
  • The cause of Dyanne’s low platelets is, furthermore, still unknown. As mentioned in the last update, her platelets dropped to dangerously low levels (15, normal range: 150-400). Hypothesis for what caused the drop include viral infection, radiation to the liver, cancer cells in the bone marrow and one of the drugs Dyanne is taking. The good news is that the situation seems to have stabilized. Her platelet level remained around 20 for some days, then, after a second platelet transfusion, jumped to a bit more than 60 and then fell down to around 30. We should get a new measurement tomorrow and will see what the level is then.
  • Due to Dyanne’s somewhat improved situation, the hospital was keen to check her out. They offered to move her to hospice, which fit nicely with their working hypothesis that her days are counted and that further active treatment was both foolish and futile. Even if we accept that palliative care and hospice can be very useful complements to active cancer therapy, hospice did not seem like an attractive residence just after you have decided to have one last go at killing these nasty cancer cells. We thus resisted this and in the end decided the best option was to go back home.
  • So home, sweet home, is where we went. With Dyanne on oxygen 24/7, barely able to walk a few meters with a walker, on a number of pills (all difficult to swallow), and with platelets just above dangerously low level. To say this has been a walk in the park would be to exaggerate. Luckily Dyanne’s parents are staying at our place and can help out. And we have other family and friends who can help too. The municipality is also providing some practical assistance. With all this, the move home has gone reasonably well. There have been ups an downs, but, if one can manage, home is, after all, a nicer place than hospice.
  • The present situation is that things are reasonably stable, and we are also having a go at reducing the dose of opiates Dyanne is on. She is taking quite a bit of codeine (mostly to control cough) and oxycodone to control back pain. These drugs work, but are very far from side effect free. And they are addictive. Thus we are slowly trying to taper these drugs.

So, we are back home. Another infusion of irinotecan is scheduled this week, and, in between all the pills, the oxygen and the walker, there are some smiles and some semblance of normal daily life. How long will it last? Is the irinotecan able to kill some cancer cells? Will we have to go back to hospital or surrender to hospice? We don’t know. But for now we are home, and we hope to keep it like this for a while. We take a day at a time. At home.

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