(Oh Boy ~ another post I put into draft instead of publishing; what is going on?)
You might be wondering about the little things that are happening with Mathew.
These things are likely the side effect of chemo and not his cancer.
We already know he was in significant pain from the tumour in his spine. His leg buckled unexpectedly because the nerve coming out of the L3 vertebrae and running down into his left leg is being compressed (squished) by the tumour. Relief only came by way of morphine and Lyrica and either laying in bed or sitting a certain way in his chair. Walking for any distance was too painful and he was reduced to using a walker or wheelchair to get around anyway outside of our home.
What about now? What are the daily changes we are seeing after 2 months of chemo?
The most significant changes are fatigue and nausea. It amazes me when I read blogs of other cancer patients when they are up and running around while on chemo; working, shopping, walking the dog, etc. There are some Ewing’s Sarcoma blogs where the individuals seem like they are carrying on with almost normal lives. How is this possible? What is so different in them that makes it so much easier for them? Mathew is practically bed-ridden and he isn’t even halfway through his chemo…??
Mathew’s fatigue is most prominent. He spends most of his time in bed except for the twice weekly blood work days. On those days if he has any energy at all, he wants to go out after. We generally go to the mall or to a store or two of his choice. By the time we get home he is obviously exhausted and ready to rest again. He naps through the day, every day. Sometimes he just dozes in and out of sleep while at other times he is deeply asleep. On those few occasions he is feeling almost sprightly he will come out to the living room and visit out there, watch a movie and hang out with our dogs. Last week he had one great evening and we headed out to McDonald’s for his beloved chicken nuggets and a visit to his Uncle Harry’s for an hour. That knocked his wind out and he then retired back to his room.
Other times if he is up for it, he will sit in his chair and play his beloved gaming systems. He looked forward to the newly released Playstation 4 system for so long and was bitterly disappointed we missed the pre-order first shipment (he was in the hospital at the time). His cousin Ben paid forward a very special gesture when he switched places with Mathew on the pre-order list. Mathew’s PS4 is coming in the next shipment which might not arrive in time for xmas depending on that initial demand. Ben’s was in the first shipment. For the first time in YEARS we actually surprised Mathew when we presented it to him on the first pick-up day. It was a good energy day for him and he was so thrilled and surprised ~ it was awesome! Whenever he can get out of bed that is where he is, trying out his new system and the games he got with it. Ben, two thumbs up and Mathew is looking forward to playing games online once yours come in. That was such a generous act of kindness for which we will always be grateful. Like I already said, it has been years since we have surprised him like that!
Mathew also loves his Nintendo DS3 and his iPad mini. Those are his go-to hobbies when he is in bed and has enough energy to stay awake any length of time. His favourite activity is for either John or I to lay down beside him and watch him play a game on the DS, or watch something on his iPad mini with him. Most of the time now though, he is too nauseous for us to even touch his bed. Bumping his bed sends him into fits of complaining. Adjusting his covers or pillows causes him problems. Him moving his hands or arms causes waves of nausea. When he is like this he doesn’t even like his lights on. The tv or iPad screen makes him nauseous and he doesn’t want any noise, except his fan. During these times ~ which is every day ~ John and I take turns sitting in the reclining chair in Mathew’s room. We each have an electronic device akin to a portable ereader or internet surfer. I’m not sure what John has (a Sony playbook methinks?) and I have my iPad. When Mathew is recuperating after a bout of chemo I have to cover the iPad with a blanket so none of the screen’s light bounces off of anything in his room.
Mathew rarely eats anymore. Smells from our kitchen make him queasy and you can’t eat in his room. John drinks coffee and Mathew can’t stand the smell of that either. Cleaning supplies make him nauseous. Any scent, even a different shampoo turfs you out of his room. His taste buds change frequently so he never knows what he can tolerate. Last chemo cycle he couldn’t get enough of the Dole Strawberry and Kiwi juice. He couldn’t stand water. This cycle he can’t drink enough water and “supplements” with the Dole juice. He likes hard cubes of cheese and apple slices on some days, just chicken nuggets on others. He eats maybe 3 meals in TOTAL a week. We encourage him to drink one or two Ensures a day. He likes the chocolate flavoured Ensure (please don’t let those taste buds reject that EVER!), so we get the calorie-rich ones for him to drink. Sometimes he can’t stand cold beverages. Other times lukewarm drinks bother him.
Mathew’s thumbs and fingertips go numb frequently and he can’t pick up objects easily anymore; especially small ones. Removing screwtop lids is a problem so we usually open drinks for him (water bottles, etc). His clumsiness is exasperated by the numbness.
He is also complaining of vision changes such as blurriness, off and on. This is over and above his regular eye impairment. He is supposed to wear glasses and has an astigmatism in one eye, so this is in addition to that. He refuses to wear his glasses and that is its own nightmare at the best of times so it is not worth fighting about now.
There are bathroom difficulties common to cancer patients. He is either so constipated that he tears or he has burning diarrhea. We are either giving him medication to make him go… or other medication to try to stop him from going too much. It just seems an unnecessary insult on top of injury, you know?
Mathew is definitely much weaker than he ever was. He tires going from the house to the vehicle or even from his room to the bathroom and back on most days. When this is over he will probably require physiotherapy to get him back to his normal activities.
When Mathew takes Decadron, one of the prescriptions during chemo treatment (and 3 days following the outpatient cycle) he becomes extra moody. At other times he is emotionally fragile and easily upset. His temperament changes frequently and he usually starts getting upset when another treatment nears.
Mathew cannot have a bath because he can’t get up. The tumour prevents that. He can’t stand for periods of time either; previously due to pain and now due to weakness. So he has a bathing chair in the tub and we shower him. Once he is under the shower he doesn’t want to get out because the water feels so nice. By the time he is done he is exhausted and usually has to go right to bed and we dry him off there. Due to his chemo, we change the towels after each use; sometimes his skin oozes the smell of the chemicals.
Mathew gets chilled frequently (unheard of pre-cancer) or suddenly sweats. By that I mean he soaks his bed sheets. We usually strip his bed once or twice a day because of his sweats; the sheets look like they just came out of the washing machine they are so wet. We want him to be as clean and dry as possible. Always.
Then we monitor his liquid intake and his prescriptions. We keep a journal of what medicine he had and when. We note any meals or food he ate and what he drank. For the first week or two after chemo we measure his fluid intake because if he doesn’t drink enough he gets very ill and ends up back at the hospital for intravenous fluids. We watch over this every single day. There are his usual non-cancer medications he needs, his cancer-related pain medications and his cancer “supporting care” meds. Then there are his two daily injections. We put Emla cream on the areas 1 hour before the injections as that is the minimum time it seems to take the cream to numb his skin. One injection must be prepared while the other one comes all ready to go.
Twice a week Mathew goes for blood work. Some weeks he has to go for IV fluids or blood transfusions. Family doctor trips are other occasions that take up time. Once the radiation starts, that will be daily trips to the hospital over 6 weeks.
Mathew tells me he feels like he is wasting his day or life by spending so much time sleeping. I tell him that is his most important job if his body needs it. His body is working to repair itself when he rests and to go with it. He doesn’t like being alone (it is one of his biggest fears) so John and I spend a lot of time just being there for him, in and among all the appointments, tests, treatments and daily living tasks.
This might give you an idea of what his life is like right now. It is easy to imagine what might be happening behind our closed doors but you really don’t know until you walk beside someone undergoing treatment or if it is you on that path. On those many days when he is very nauseous we also deal with the vomiting.