The first week of treatment is done with side effects already cropping up. After that nice, long nap he had last Monday things went downhill until Saturday night.
On Tuesday we returned to the hospital for instructions on injecting Mathew with his 2 daily needles. On Thursday John read through the instruction pamphlet and called the head nurse of Oncology when he realized we were injecting Mathew in the wrong place. The nurse confirmed the anticoagulant should go in his belly and the neupogen in his arm. There can’t be much harm done because no alarms went off and we weren’t ordered to rush him to the hospital. The injections are bad enough as it is ~ Mathew gets an Ativan an hour in advance to calm his nerves and the injection site gets a hefty slop of Emla cream it. Sometimes the two aids work and sometimes he screams and panics anyway. Some places bruise, some don’t show up and one turned red with a raised area. Right now the shots are given around 5:30 pm which is shortly after I get home from work. It stinks that he’ll end up associating my homecoming with the unpleasant and painful task of needles.
Mathew’s port is healing slowly. The bigger cut, where the port was inserted, started out black and blue and in one week faded to a sickly green and yellow. The incision oozes a little bit of blood; the doctor glued the edges together (so much for duct tape holding the universe together!). The other, smaller, incision is almost healed. The port was used the same day it was inserted (Monday) and then again on Thursday. Even though a hefty dose of Emla cream covered the skin over the port it hurt like hell when the nurse pushed on the skin to find the port under the swollen skin. She couldn’t feel the 3 points on the port that is where to connect to the port and she jabbed him twice – and missed.
By the third try Mathew was down on the stretcher and a different nurse successfully inserted the needle and got the vials of blood needed for the twice weekly bloodwork. The more the port is used the more desensitized the skin gets, making it much easier for treatment or bloodwork. Today (Monday the 23 Sept 13) accessing the port was much easier although Mathew had a rougher time anticipating the pain. In fact, the nurse had to poke twice but it didn’t hurt nearly as much as last week. Maybe in another week or so it will become an non-event for everyone….
Mathew is experiencing a sore stomach, nausea, headaches and mouth sores from the chemotherapy. He complained of a sore mouth a few days after chemo and looking in his mouth, small sores are evident. He is using the yellow, nauseating mouth medicine prescribed for just this reason and yes Monika, I think it is the same stuff you used. The instructions read for him to swish 1 mL but I wonder if that is an error; 1 mL is less than ¼ teaspoon and that isn’t enough to swish anywhere. I mix it with ¼ tsp water so he can move it around his mouth. The nausea and sore stomach are treated with the anti-vomiting medication, unfortunately that doesn’t stimulate the appetite.
So…. Mathew stopped eating and drinking. Since he has to drink 2 L of fluids a day to flush the chemo out you can imagine our attempts to get him to drink anything. Everything tastes off and nothing appeals anymore. I can’t believe how fast that happened! From swigging several glasses of water daily to feeling queasy sipping his favourite drink…this sucks! In an effort to tease his taste buds we present him with different foods and drinks. So far Brisk and popsicles are his liquids of choice. The problem with Brisk is it contains caffeine and serves as a diuretic in large quantities.
Mathew doesn’t like his old favourite milk products like chocolate milk and ice-cream right now and pizza, the ultimate meal? Forget it. Meals consist of a couple of bites of cereal, a bit of mashed potatoes and a little pasta or chicken fingers. Even that is a challenge and the best way to encourage him to eat it is to present it to him on a plate and leave it. Eventually he will pick at it if it is in front of him long enough.
*** a side note to above; Mathew started to feel better on Saturday evening and with it, a little more of an appetite. His digestive system kicks up now and then but overall he is feeling more like his old self. This will probably be a pattern when he receives chemo.
Sound sleep continues to elude Mathew as well. Aside from Monday’s sleepfest, Mathew only napped on and off until Saturday night. At last he finally drifted off around 8:30 pm and mostly slept through the night, waking only for bathroom breaks or for medication. John and I can attest to this because we occupy either Mathew’s recliner or his bed, depending on which he is using. Earlier this week his nausea and stomach pain worsened when he tried to lie down so he spent hours sitting in his chair and napping a bit. Last night was a relief and no matter when he woke up he smiled at me and said “hi” in a quiet voice. He was so happy I was there.
Right now Mathew only wants John and I around because his emotions are running wild. Whatever that is due to is unclear; lack of sleep, constant discomfort, pain from the tumour, etc, it probably all contributes. One minute he is fine the next he starts to weep. Other times he drops off to nap unexpectedly or his temper flares or he is just so nauseous that he doesn’t want to talk even. He feels comfortable and safe letting it out with us but not with others presently so he isn’t keen on visitors. I expect over time a pattern may emerge and then we can plan for activities when he is up to it. Until then please be patient; Mathew is easily overwhelmed during “normal” times and this burden is awfully heavy for him to manage with too many people coming through. Yesterday, for example, Mathew felt better so he and John moseyed on over to visit Nana and Poppa and Aunt Wendy when she stopped in.
John and I trade off time with Mathew, including the nights. If we aren’t with him then we are resting or trying to sleep. This new normal is a work in progress and one where the routine isn’t established yet. I hope some kind of pattern clears its way for us to recognize so if Mathew has a few bad days he can count on a few good ones coming after that.
On a lighter note, Mathew and I caught a terrific “B” movie on the weekend (at home). Perhaps you’ve heard of it? It is called “Sharknado” and it is so out there it is freaking hilarious. The special effects are hysterically bad, the conversations ridiculous and overall entertainingly awful. Be warned though as it is gory; those flying sharks are out to eat anything they can. If I was ripped from the sea and flung through the air I might be a scared and try to get back to water, but not these guys. These guys probably engineered the whole disaster just to dine on tastier two-legged morsels!
One side note; Mathew’s had some relief from the leg & back pain. This is baffling however not constantly handing over break-through morphine is awesome. Some combination of therapy is likely contributing as it is very unlikely the tumour shrunk in one week. Do any of you know why this is?