The night before his first chemo treatment, Mathew and I went out for dinner and movie. He had his usual “Bathroom Sink” meal at Jungle Jim’s but partly due to the heat in the restaurant and the uncomfortable chairs most of his meal was packed up to go.
We then headed into the Saint John theatre to watch Lee Daniel’s “The Butler”. The movie is based on the true story about the longest serving black butler in the White House. It is told from the butler’s point of view and begins when he is a child, picking cotton with his family in the deep south. It travels through time through his years serving the White House and its various presidents and we also watch his family grow up. It tells about his dedication to service and at the same time, his son’s struggle through the 1960s, 1970s and beyond to be part of the movement for racial equality. The two of them clash as each grew up in a different era. Yes, this is the movie also starring Oprah Winfrey in a supporting role and to her credit, you quickly forget who she is and focus instead on her character. We both think it is a great movie.
We got home close to midnight because he napped in the afternoon so we went to the late show at 9:15 pm. He had his first pre-op shower earlier that day fortunately so we trundled off to bed right away for a restless, sleep deprived night.
The second shower was early in the morning before showing up at the hospital for his 0830 hour scheduled day surgery. The shower sounds like a simple matter, hopping in and washing yourself off. Not so fast though – Mathew has a shower bench and WE have to bathe him and wash his…er, uh..his scalp now. Mathew also had both showers because, let’s face it, if we skipped one then we would face the wrath of a displeased nurse when Mathew squealed on us the next day during the in-patient procedure. The nurse checks off each step and asks if it was done; Mathew’s indignity at the rules NOT being followed would force him to rat us out (It is important and shouldn’t be skipped however because it serves to minimize the chance of picking up MSRA or some other evil bug lurking in those hospital halls).
We were tired and cranky by the time we showed up for Monday’s itinerary at the hospital. Partly from sleepless nights and partly from worrying about the impending procedures. Not to worry though as we settled right down into the old hurry-up-and-wait routine. The port was supposed to be inserted at 0930 hours but it didn’t happen until after 1030 hours. By then Mathew’s lips were cracked and he was agitated.
Mathew’s hysteria rose until a kind nurse showed him the physical size of the port he was getting. Its diameter is probably a bit larger than a quarter and that relieved his worst fears ~ he thought it would be about diameter of a coffee cup! It is inserted between the skin and muscle – the nurse explained it well by telling him to imagine a chicken breast. The skin is cut and the port sits on top of the muscle and just under the thin skin.
I gowned up to accompany Mathew into the operating room and left once he was asleep. Although he asked them to explain exactly what was going to happen… they neglected to tell us one teeny, tiny detail ~ the part where they wake him up while he is still in the operating room and get him move as per their commands. This is done to ensure the port and tubing doesn’t dislodge from the vein. Regardless of the reason he didn’t like that surprise! After the 45 minute procedure Mathew was whisked by so fast I only saw his head bobbing around the corner. (Geez those guys move when transporting patients!) We didn’t have a chance to catch him before he went into Recovery so we ambled over to sit our butts in those ubiquitous waiting room chairs. Volunteers and Mathew’s orderly updated us about his recovery (they ALL said he was holding court in there!) and also revealed one of his nurses was in fact, our neighbour! Who knew? All these months of my dogs hanging out with her big, black lab… my dogs scraping at her door for treats, crapping in her yard and peeing on her bushes…. yeaahhhh.
John’s sister and mother waited with us until Mathew passed us again on his way back to day surgery. Wendy and Jean attended the 2 hour Chemotherapy Caregiver session offered by the hospital and then said hi to Matt before heading home.
Mathew might have been jolly in the recovery room but that changed when he went back to the day surgical ward. He was miserable, loud and rude. I felt bad for our attending nurse because nothing made him easier to manage, not even when John got him a meal from the cafeteria. I am sure the entire day surgery ward was relieved when Mathew transferred to the oncology ward on the 5th floor.
Mathew’s chemo treatment didn’t take place in the customary chemo “chair” in the chemo treatment room on the first floor. He went to a small, 4 bed room on the Oncology Ward. This special room is reserved for any chemo patient who needs a bed for treatment due to weakness, illness or some other kind of intolerance to the regular room. The staff felt Mathew would be calmer upstairs in the quiet room.
Oh it was quieter up there alright until Mathew arrived, then it changed to chaos and noise. I am very sorry the other patients were disrupted. I hope they understood that Mathew reached the end of his rope and that, combined with exhaustion and fear, just sent him out of his head for a little while. Normally only one or two of the beds are occupied but not that particular day; a lot of people got to enjoy Mathew at his worst.
Treatment took a while to start.
We read through leaflets on each chemo drug, its side effects before signing the consent forms. Mathew needed a couple of anti-nausea drugs and his pain medication after which time we waited for the hospital pharmacy to mix his chemotherapy drugs and send them up.
First a steroid was injected through the IV. I’ll ask again what that was for because I forgot during the heaps and heaps of information thrown at us. Then came the 3 chemo drugs. The first drug, a red one, can’t be mixed with anything so the nurse pushes it through the port slowly over a period of 15-20 minutes. Ideally the patient sucks on ice chips or popsicles during this time to minimize mouth sores caused by the red drug. The cold product reduces blood flow to the mouth and lessens the drug’s impact to that area. Unfortunately Mathew’s exhaustion put him into a slumber that no one had the heart to wake him out of. This won’t happen for any of the other cycles however for the risk of mouth sores is just too high.
The second drug took about 20 minutes to drip into Mathew’s blood and the final one about 45 minutes. There is another line dripping a saline solution through his body because the fluids are essential to flushing the chemicals through the body and out as quickly as possible. The side effects of all the drugs lessen somewhat with large amounts of fluids in the system and it reduces the potential for an urine infection
(On Tuesday Mathew noticed his sandals were tight from the swelling in his feet due to the infused fluids). That should go down over a day or two. Mathew melt down one more time during treatment but his nurse negotiated peace by removing the IV in his hand.
Once you get a look at the equipment then see the precautions the nurses take when administering chemo drugs….you do wonder at how toxic they are. The drugs have heavy “hazardous” marked bags over them while they sit on the IV pole and are immediately discarded after use into big barrels labelled “toxic” and “hazardous waste”. The nurses, in addition to heavy duty rubber gloves, also don rubber gowns. Not your usual hospital johnny shirt but rubber gowns that are also immediately discarded. Mathew got nothing but a port with direct access to those same drugs the nurses are protecting themselves from.
We left the hospital with 3 different nausea and vomiting medications, another one for white blood cell activation, one liquid to swish for mouth sores and 2 types of daily injections. These joined his 3 different morphine prescriptions, the Pregabalin and Naproxen also for pain PLUS his regular daily medications. It is a daunting pile to take in on a daily basis and I’m concerned how they will go down if he starts feeling ill or nauseous.
Drinking at least 2 litres of clear liquids a day is heavily emphasized. Milk doesn’t count as it needs to be water, broth, apple juice, or a gatoraide type of drink (clear~ish rather than thick liquid). This flushes the chemicals out of the body and keeps the patient hydrated. Two litres seems a daunting amount so we broke it down into manageable 250 ml glasses of water at a time. Mathew loves water and a few gulps gets down a small glass. Every hour we give him one and whatever he wants in addition to that is a bonus.
Mathew slept mostly for the first 20 hours after we got home and it was lovely hearing him snore. He needed that sound sleep so badly. He woke occasionally to eat, play a game or to take a bathroom break. The only time he melted down was when I broached the subject of going to work on Tuesday morning. So I didn’t. I snuggled down into the covers with him and stayed home to watch his eyes grow heavy and close and watched him sleep before drifting off myself.
Yesterday’s fun activities included going back to the hospital for a learning session on injecting your loved one with a needle. Mathew’s daily injections include Neupogen and Fragmin. Neupogen (Filgrastim) reduces the chance of infection and the Fragmin is an anticoagulant (blood thinner) to prevent blood clots. Neupogen comes as a self-contained unit; rip it out of its package and it is ready to go. The Fragmin is refrigerated thus requiring some needle assembly and drawing the serum up into the needle. I did the Fragmin needle which goes into Mathew’s lower abdomen and John injected the Neupogen into Mathew’s arm which is the more painful one.
Okay cancer-busting drugs: put on your Superman capes and get busy!