Today was our pre-chemo consultation with the Oncologist. We’d postponed my husband’s last treatment in an effort to give his body a chance to address both the blood clot and the thrush. The thrush is almost gone and so is no longer an issue. The blood clot on the other hand, continues to be quite persistent. His leg from hip to ankle continues to remain swollen. It remains painful to walk on, but we have commenced daily walks again. He continues to get his daily injection but the process is slow. We spoke with the Oncologist about it – is it normally this slow to dissolve a clot. Her response was yes – it takes quite some time, and he did have a large clot. I asked about compression stockings – her response was – not yet. The swelling has to go and then the stockings/socks would be ordered as a preventive measure.
The Oncologist asked my husband if he wanted to defer his chemo treatment for another week. They chatted for a minute or two about it, and he decided that he would go ahead. His rationale was that he felt so lousy anyway for the week he took off of chemo, he should have had the treatment. He continues to experience waves of nausea and lightheadedness. This we discussed with the Oncologist. She attributes the lightheadedness to blood pressure. His blood pressure drops considerably when going from lying to sitting, or sitting to standing – around 14 points. Slow and steady is his rule for movement. The nausea could just be his particular experience with the chemo treatment. It may just be that he needs to use the anti-nausea medication on an ongoing basis to stay ahead of the nausea. All in all it was a good visit, especially since I didn’t have to do the daily injection – the doctor did it! I just cannot get used to giving that thing.
So chemo treatment 3 will go ahead on Wednesday – hydration has already been ordered for at least two to three days after his treatment. After that the moment of truth – he is scheduled for a CT scan to see if the treatments are effective. The CT scan is set for the 20th of October. I sure hope the news is good news!
Another day of restricted activity, enough to make a man crazy. He’s still a little woozy and not confident on his feet. The visiting nurse came and did check in to see how things were going. The leg has gone down slightly but definitely not in a uniform manner. There are large indentions in his flesh where the fluid has gone down, specifically above the knee and on the cheek of his butt, but at least it is a visible sign of the clot dissolving. His colour, demeanour and even voice would suggest things are improving. Not the quick fix we had hoped for but still things are moving forward not backward!
I spoke with our nursing contact in Oncology to determine if his dosage from chemo treatment 1 to chemo treatment 2 was changed and she advised he had received the exact same dosage, there were no changes. We considered a couple of things that could be contributors to the absolutely horrific week he had last week. Naturally, the developing blood clot was likely one of the main factors making him feel so lousy. He also got thrush at the same time, which could just be bad timing. We talked about the need for regular bowel movements – he’s been very good up until the last few days. I think we are on day 3 of no movements, and this was one thing that concerned the nurse, so a bowl of stewed prunes tonight after dinner will hopefully help in this regard. By the end of our phone conversation the nurse had gathered a fair bit of information from me with respect to his existing condition. She plans on calling me back on Thursday to note if any more improvements have been made.
Overall a bit better day on all fronts. The furnace got installed, the car got fixed, the hydro agreed to come and look at my damaged tree. All those mundane things that for some reason became so overwhelming are resolved or in the works and off my plate. Amazing what a difference one day can make.
So we are a full week past chemo. The treatment was a week ago Wednesday – that’s 8 days. Yesterday was a terrible day for my husband, he suffered with severe nausea and was light-headed the entire day. The visiting nurse was in and did an assessment and came back again this morning. Prior to her arrival this morning, he wanted to shower, which we did, but he was very wobbly, unsteady and dizzy. It was extremely unsettling for him to think that the simplest of movements now became a chore. We managed to complete his shower and get him back to the bed – but had to use his rollator to do so. Shortly after this the nurse arrived. Her immediate response was that what he is experiencing is not normal. The nausea should have passed by now. She did a standing test to see if blood pressure was behind his dizziness, but his blood pressure didn’t drop from sitting to standing.
The nurse called our GP and had a discussion about next steps. For today a litre of hydration was administered, which seemed to perk him up visibly, and likely another litre will be administered tomorrow. The doctor and nurse discussed the difference between his response to his first chemo and second chemo and will provide a report to the oncologist. It may be that his chemo dosage was altered from his first session to the second. For the first session his blood test results were low, and it is possible that the dosage was slightly less. His physical reaction to this second treatment will be documented and shared with Oncology. I will also follow up. It may just be that he can’t tolerate the dosage of chemo he received the last time.
So again another lesson learned – don’t assume anything. We had figured and had heard stories about the nausea associated with chemotherapy. We assumed that the nausea was an ongoing thing and what he was experiencing was “normal”. It’s not and there can be a variety of reasons for it – regardless of which, there is no cause for the patient to suffer. So a little smarter and little wiser and hopefully by tomorrow a whole lot better.
It’s late and I’m tired. Although things have settled down a bit, the worry never leaves. Today, he was very, very tired and lightheaded. He ended up going down on his knees in the hallway because he was “woozy”. No harm done, but there’s always the what ifs that linger. We are officially at the lowest immune level which mean the highest potential risk for catching infection. So although the nausea is gone, the invisible fears are still all around us. These things bring me back to our painful reality.
When my husband was diagnosed with this no one in the medical field offered us any hope. A simple visit to the emergency room at the hospital ended up with a diagnosis of inoperable lung and bone cancer. The man had been playing tennis the week before and in one day, 24 hours, our world was devastated. The resulting visits to the specialists didn’t give us much to go on. They wanted us to understand that this was a terminal illness. There would be no operations or miracles to come our way. Any treatment would be to gain quality of life, not longevity. The prognosis was given to us in months, not years.
So sometimes, like tonight, when he’s sleeping, I have my moments I cry, even though it doesn’t solve anything, I cry. It doesn’t mean I’ve given up hope, if anything it makes me more determined to prove them wrong. I am painfully aware that somewhere there is a giant clock ticking down the weeks, days and hours, but many people have been given the same “months to live” prognosis and are still alive and kicking years later. What did they do to stop that clock from counting down in real time? That’s what drives us on, the fact that many people have defied the odds and become members of an elite group of survivors. If ever there was a group that we want to get him into it is that one, the true survivors club.