Demolished. This is how we felt when we first got the news.
Getting used to this cycle. Had to pick the prescriptions at the pharmacy in anticipation of tomorrow’s session. Did some general running around to get ready – we have to bring our own lunch, so I went and got that stuff. Today was a decent day for my husband – his taste buds were almost back to normal. We included an anti-nausea medication in his morning medications just to keep his appetite up. Today we had to have meals heavy in protein, as is the case tomorrow morning – they want him going into chemo well hydrated and with a good intake of protein.
The weather was nice so we managed to get outside for a bit of a walk. We went to a waterfront park in our community for a change of scenery. It is a very level walking path and as a result he was able to walk further than most occasions. The leg is still painful to walk on – the clot is persistently slow in dissolving. I’ve started to measure parts of his leg just so I can assure him that it is going down, even if it is by sixteenths of an inch.
I learned early on that I hated the numbers and stats they assign to cancer. We made the mistake early on of asking for a prognosis, in general, for someone with his cancer. When they gave us the numbers it was devastating. I’ve since put this into perspective. Cancer is as unique as the individual who has it and sometimes the numbers, in general, are just way off. You decide whether you want to be textbook and buy in to the numbers they give you. In my husband’s case we got the prognosis of 3 to 6 months and it cut us off at the knees – at first. When we were able to think again we realized that we got a statistically based response not an individually based response. However, getting back to being able to think again was tough. Cancer can consume you, it can swallow you up whole so that all you see and feel is darkness. That’s if you let it, if you can’t get past the numbers. It’s that glass half empty or glass half full perspective. I realize now we should have asked the question differently – something like – what’s the two year, five year and ten year survival rate for someone with this type of prognosis. Because even if it’s one percent it means that someone’s doing it – so why not him?
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!
It’s bound to happen during this whole ordeal. A day where I am under fire for everything I do. I push the pills at him, I nag him, I move things I shouldn’t, I won’t shut up and on and on. Although it’s easy to get hurt, and I am, I get it. I just happen to be the closest and most convenient person to let loose on. So it’s a matter of time and space I think. I’ve physically removed myself from his immediate area to give him some solitude. It’s a frustrating journey for both of us.
Today maybe I did invite a little backlash, but it had to be done. It’s day five, post chemo treatment 2. He had hydration day 1 and 2, but decided he could get his own fluids in for the next couple of days. Well that was a dismal failure, so now he feels lousy. He’s hardly drinking and hardly eating. It’s a vicious circle – he needs to take the anti-nausea meds but he doesn’t feel like drinking. His throat is sore, he has thrush, he doesn’t feel like eating. The wash for his mouth makes him feel ill. I can tell him all I want that eating food, drinking fluids and rinsing his mouth will make him feel better but, as he has pointed out, I don’t have a clue about what he’s feeling so just zip it. So I have. However, I left the anti-nausea meds by his chair (and he has taken them already), I’ve put two different kinds of beverages out for him to sip on (and he is), and he does the thrush rinse because he’s not stupid. So I know it is frustration talking when he lashes out and I have to remember it’s not a personal attack. This is likely a pretty normal situation for most caregivers but again it’s all new to me and it is my reality and so I cope.
Yesterday was treatment day. By the time we got home we were both exhausted. The evening was short with my husband having a light dinner and heading to rest by 930ish. He slept deeply through the night and woke up quite groggy today.
Although he had great intentions to have a protein rich breakfast of sausage and eggs, when I put them in front of him he changed his mind to a bowl of hot oatmeal. He took his anti nausea meds with breakfast, but began to feel quite nauseous within the hour. The doctor and nurses at the cancer clinic were quite emphatic that hydration is key to managing the nausea. They recommend drinking 2 liters a day of fluid to flush the toxins out, however, it is hard to drink that much when you feel like throwing up.
I got a pitcher out and measured out the amount of fluid required so he had a visual of what he needed to drink. He also took some of the “as needed” anti nausea meds he had been prescribed. As a result he was quite tired and slept for a good part of the day.
The visiting nurse came to change the dressing on his picc line as well as flush it out. This will happen once a week. She also spoke about what the next couple of days may be like.
After the visiting nurse left the nurse from the hospital called to follow up on yesterday and see how he was doing. She advised that if his fluids were low he would feel even more nauseous. If he continues to feel nauseous she recommended having intravenous fluids at home. She would do an order and the visiting nurse could administer the additional hydration over the weekend. We will see how the night goes. This may be the best solution yet.
Prior to attending the hospital today I made a phone call to the oncologist. I had heard that usually there are medications that should be started the day before the treatment and we had not been prescribed any. That was yesterday. Within 20 minutes of making my call I had four prescriptions faxed to the pharmacy. One he had to start yesterday, and three he brought with him for today’s session. Because he gets an hour of hydration before his chemo infusion my husband is able to take the other meds when he gets to the clinic.
Once we arrived at the hospital we were sent to the cancer clinic. The nurse reviewed my husband’s prescribed regimen of treatment with us and went over side effects, most will manifest tomorrow or the day after. His dosage for chemo is a strong one and he is likely to experience nausea and perhaps vomiting. We will have to wait and see.
So for today we have two different chemo preparations being administered as well as an hour of hydration before and then another hour after his treatment. Will keep my fingers crossed that we can stay ahead of the side effects this time.