Before I start this entry, I wanted to let everyone know why it's so late. A little more than a week ago, our oldest daughter gave birth to our fourth grandchild, Cooper Andrew Brown. He was born about two weeks early and is a little small, but he is absolutely fine and so is his mommy. His mommy is small too. She was born 16 weeks early, just about 24 years ago... One of our sons down was here too with his year old son, Avery, so we had a crowd but in a very good way! I would like to thank those of you that wished us good luck and congratulations on the birth. We are quite blessed! And that is why this post is later than usual. I am sure you all understand.
Now, back to our journey...
March 4, 2013. Our youngest daughter's 14th birthday, but also the date that I am to get the power port installed under the skin in my chest and the start of chemo and radiation therapy. It's going to be a very busy day. It's also a day I am rather worried about. We have all heard how chemo and radiation affect people. The sickness, the loss of hair, the loss of taste buds, dehydration, weight loss... All things I do not look forward to. I do hold on to one fervent hope. When my father went through his chemotherapy for his colon/liver cancer, he did not lose his hair nor did he get sick much. He did however lose his taste buds. I remember him saying that everything he ate had no taste. It was like eating cardboard. He ended up with an NG (nasogastric) tube to get food into his belly before we lost him. I have a J-tube for that, however it has not been used other than to be flushed with water twice a day since I left the hospital.
We wake up early as I have to be checked into the outpatient surgery clinic at the hospital no later than 6:00am for a 7:30am procedure to get the power port installed. Things go smoothly this morning. My blood pressure is up a little, but that is probably due to the fact that we've discussed before about me always hating going to the doctor. I also have a history of running a low grade fever that has, more than once, nearly torpedoed procedures in the past. The doctor's office had called the night before and told me to take one Tylenol and one Diazepam in the morning in an attempt to counteract that. It worked. If I am worked up before a doctor visit, that is something I can do to counter my body's attempt at rebellion. After getting dressed in loose fitting clothes and a shirt that buttoned down the front, and then getting all the oxygen tanks and all ready and hooked up, it is into the car and back to the hospital we go. When we arrive, we debate whether I should take the oxygen tank in with me. I say no since they will have oxygen there. Lea Ann says yes, because who knows how long I will have to wait and we did not bring my PulseOx monitor. She wins, as usual. We are one of the first people to get there but still end up sitting in the waiting room for almost 45 minutes before they call us back to the pre-op area.
The people there remember us. I'm not sure that is actually a good thing, but I do admit is it nice to know the people. There is a comfort level that comes with that that can calm a person a bit. Weighed and measured and temperature checked. Still losing weight. Lea Ann gives me a sidelong look at the weight, but I try to ignore it. I know I am losing weight. It comes with the territory. I do understand her worry though. I am worried about it as well. I just know I had the weight to lose. I really should find a less radical diet program, but it's too late for that now. Into the curtained off area, off with the clothes and on with the hospital gown. Lying on the gurney with the TV on the local morning news for some extra noise, I look over and smile at Lea Ann. We should be getting to be old hat at this by now. She smiles back and pats my hand then goes back to watching the TV, as do I. Soon the nurse is there to start the IV and I get the usual speech about what will happen and what I can expect and such. IV in place, I am getting saline to hydrate a bit. Hmmm... Traffic on the way into Phoenix is heavy and a lot of accidents. Glad I don't have to mess with any of that. Soon after, the doctor comes in with his assistant. They seem chipper and in good spirits. I like that. Might as well have the doctor being a good mood when he is cutting into you, right? He explains the procedure in detail. The instrument being placed under the skin in the upper right side of my chest is called a Power Port. He also hands Lea Ann a folder full of information on it that includes a card for my wallet and one of those rubber bracelets that you see a lot these days that says "Power Port" on it. This port will be placed in such a way that I will only need one stick to get the chemotherapy infused into my bloodstream and it can also be used to draw blood for tests and all. Do we have any questions or concerns? Lea Ann asks how long this procedure will take and how long I will have the port in. A good question. Doc says, and I quote, "The procedure this morning is 20 to 30 minutes. And as pertains to how long I will have the port inside his chest... As long as it is needed." I am really starting to hate these non-answer answers and I say so. He adds that this is something that he tends to drag his feet on removing in case it is needed later or anything. It does not hurt to leave it in, and he would rather leave it then take it out and put another in later, just to save the patient from more cuts and more anesthesia and all. OK, that is reasoning I can live with. I also mention that the chemotherapy people have requested that he keep the infusion tubes in the port when he puts it in because they are going to be using it as soon as I get there later this morning. I am scheduled for the start of chemo at 9:00am. Doc's assistant scribbles notes in a tablet and he nods, makes sure all of our questions are answered and then says he will see me down the hall in a little while. The anesthesiologist comes in and explains how things will work. They are going to use "the Michael Jackson drug" on me to sleep. Propofol is my friend. I have a lot of experience with it these last few months and have had zero issues with it. I'm comfortable with it and so is Lea Ann.
In and out of the procedure clean as a whistle. After waking up I take a peek at the site where the port is. It is pretty swollen, and has some stitches in it. With the tubes sticking out of it, to my still waking up mind, I think it looks like a octopus stick to my chest. With all the swelling, I am glad they decided to ask him to keep the tubes in. If they had to stick that now, it would be sorer than it already will be. We stay in recovery for about half an hour or 45 minutes, then I am allowed to get up and get dressed. We have to get over to the cancer center for chemo and radiation. I am told several times to be extra careful with the port, then they cover the tubes with a gauze pad for some extra protection. As per hospital policy, I am wheeled out to the curb and helped up and into the car. That makes me feel so old, but I do understand. The ride to the cancer center is about 15 minutes. Ironwood Cancer & Research Center in Mesa, AZ. The place I will see every week day for the next month and a half. We arrive and check in. Immediately I am taken back to the chemo room. It's a large room with a lot of recliners in it. About 2/3 of the recliners are filled with people of all sizes and shapes and ages. Most look to be the older generation, maybe 10 or 20 years older than me, however there are some that look younger too. Once again I am weighed and pressurized and temperature taken, then shown to a recliner. Lea Ann can come too and sit in the chair next to mine unless they are busy and need the space. We have also brought our tablets as a distraction while the chemo happens. After a few minutes a nurse comes up and pulls over a small cart and an IV pole. She says she will be my nurse for the day and asks if I have any questions. I do, after all it is my first chemo session and I have no idea what to expect. She explains that they will first hook me up through the power port and then put me on a bag of saline to hydrate me well. Once that is complete they will hang the chemotherapy medications. In my case that is Cisplatin and something she called 5FU. She says the infusion will likely take an hour and a half or maybe two hours. The entire chemo procedure usually takes two and a half to three for what I am taking. As to how I will react to the chemo she has no real idea. Each person is different so each reaction is different. I may get sick, I may not. I may have to use the restroom a lot. If I lose my hair it won't start just yet, so I shouldn't worry about that too much right now. She suggests that I just recline back, take a warm blanket and just relax and read or sleep. I KNOW I will not sleep, but I am a professional recliner sitter. After answering my questions, she hooks me up to some saline and lets it run. She will come back to check on me in a little while. So far its not too bad. To my left is Lea Ann and to her left is an older gentleman that has been quiet, but watching. He has a bright smile and says hello. Sadly, I cannot remember his name right now, but he has lost a good portion of his hair and has several bags hanging on his IV pole. He says he has been here for a while and still has quite a few visits left to go. He also says the people here are very good and we have nothing to worry about. Very nice and professional and personable. I nod at him and smile as I had also gotten that feeling in the short time we have been here. To my right is an empty chair then another man in the next chair. He looks closer to my age, and honestly doesn't look sick. He still has all his hair, his color is good too, but he is hooked up to a few IV bags and also has a fanny pack in his lap that another nurse is working on. We introduce ourselves and I find out that he only comes once every two weeks. The rest of the time he has this fanny pack that infuses the chemo for him over a 48 hour period after this chemo. He lives alone with his bird. We actually talk a bit of nerdy tech talk and that takes my mind off things for a time. It is starting to dawn on me that these people are very friendly and very willing to talk about things. This is good. Talking takes my mind off some of the worse thoughts. It is amazing what a shared experience can do to open up people to be able to talk easily. My saline drip runs out and the nurse hangs my chemo meds. The conversation has dwindled a bit, so Lea Ann hands me my tablet and she opens her Nook to read. The nurse stops over to check on us and mentions there are free drinks and snacks on a counter across the room. Water and protein drinks and crackers and cookies, even some fruit if we are so inclined. Lea Ann asks if I want anything and I am kind of thirsty so I ask her for a drink and maybe some peanut butter crackers. She returns with stuff for us both, but she asks before she eats hers to make sure it is not just for the patients. I smile at that. My wife is a really smart cookie and doesn't want to deprive anyone of anything. Its fine, she can have some too, so we both eat and drink a bit. These protein drinks are the pits though. the taste is bad enough and the aftertaste is worse... ICK. But I choke it down. It helps wash down the crackers which are good. One of my favorite snacks.
While infusion is happening we get a visit from a lady who volunteers for the American Cancer Society at this facility. She is very nice and asks if we have any questions or if we would like to have any extra reading material on cancer and what is available to the patients. Lea Ann does most of the talking here. For some reason I do not want to have ANYTHING to do with the cancer society or reading about it or support groups or whatever else. To this day I am still not sure why I was like that. Now I see how much help talking about these feelings and all does, but then... Nope. Not going to do it. Leave me alone thank you. The lady and Lea Ann talk for several minutes. She gives Lea Ann two Cancer Center tote bags that have a water bottle and some reading materials in them as well as a 6-pack of protein drinks. Even though I don't like them, they are a need and she can use them to make my shakes at home and such. She smiles at us both and thanks Lea Ann and leaves to talk to others. I hope I didn't hurt her feelings or anything, but I just did not want to talk to her.
After about an hour and 45 minutes, my IV bags are about done. The nurse comes over, stops the drips and starts to disconnect me. The port tubes are removed and now on my chest is a swollen area with some stitches and a little red hole in it where the tubes were inserted with the needle. She puts a dressing over it and tells lea Ann how to care for it over the next week as I will not be back in the chemo room for a week. I feel like I have one boob on the right side of my chest...
Now on to radiation. It's in the same building, just on the other side. I am not feeling any ill effects from the chemo and seem to actually feel better than I have in the last couple of weeks. Not sure why that is. Maybe it is adrenaline or something, who knows. We sign in and wait less than 30 second before they call us back. We go from the front waiting room into the radiation waiting room. This is where Lea Ann will have to stay as only the patients are allowed in the radiation rooms. That makes sense. The techs here are just as personable as the nurses and aides on the chemo side of the house. They come and get me to take me back and tell Lea Ann this first treatment will be longer than usual. They have to mark me and all for the radiation, make a mold for my head and neck to keep my body in the same position every time, then do the treatment. Should take 30 minutes or so. The rest of the time will be like 10 minutes for each session. I am taken into the radiation room and asked to take my shirt off. if I have anything metal on, please remove it. So off come the glasses and the wedding ring. I am asked my name and birth date, something they will do every time I am there. Then I have to lie on the radiation table as they read the doctor's notes and "mark" me. By that I mean, they use India ink to make small dots they will use to line up the radiation hardware so only the areas that need the radiation will get it. Three or four little black dots that they will use as guides. Hmmm... So cancer gives me another first. My first tattoos. Once I am marked up, I lie on the table and have to put my arms over my head. This is actually a little difficult because it messes with my breathing a bit and I cough some. I ask if that will be a problem and they say not unless I move a lot when I cough. I do my best to stay as still as I can. They raise the table and set the hardware where it needs to be, then tell me to relax and try to breathe normally and they leave the room. I can hear them talking to me over a speaker and they can hear me talking back... they also have some nice 80's style music in the background. A good addition. I enjoy that. As the hardware starts up it hums and thrums and rolls around the bed I am on. In fact I end up closing my eyes because watching all that hardware roll around me makes me dizzy and I do not want to get sick. The hardware circles me two or three times then stops and I feel the table dropping back down and the techs are back in the room they take the pillow that was molded to fit my head and neck and the hand holds I had above my head then ask if I can sit up. Not without help I say, so the larger guy take my hand and helps me sit up. A little too fast on that and I get dizzy and have to sit for a moment kinda wavering. He apologizes and asks if I want a nurse to come check on me. I decline and am able to stand and get my shirt on shortly thereafter. Just had to reset my internal bearings. They give me back my glasses and ring and suggest I do not wear them next time or ask Lea Ann to hold them. I am then ushered outside and sit in the hallway and they bring Lea Ann to me. We have to wait to see the radiation doc now. This will happen at least once a week and more if we have issues or questions. It does not take long before we are shown into the exam room and I get up on the table to sit. Lea Ann takes the extra chair. She asks how I am feeling. I tell her I feel actually pretty good, and that surprises me. She mentions that my color is the best it has been in a while. At that point the doctor comes in and shakes our hands and asks first if we have any questions. I say I don't have any idea what to ask. He understands that and precedes to explain the treatments that I will be getting every week day for the next six weeks. Side effects vary (of course, another non-answer answer). The most common things that happen are, the hair around the radiated area does not grow back or is very slow growing. I may start to feel a sore throat or a slight burning in the throat that will get better after a couple of hours. I may also get a metallic tinny taste in my mouth. He hands Lea Ann a sheet with a recipe for a mouth wash that will help with that if it is needed. He says thank you, says he will see us next week and excuses himself and we are free to go home too.
As we head out to the car to go home, I am actually feeling better than I have in quite a while. This makes no sense to me. How can a person feel better after chemo and radiation? I will have to ask about that one of these days if I think about it. I am actually a little hungry! Lea Ann asks if I want anything and I mention the hunger, so we stop at a Sonic (I know, fast food, but I like it!) and I get a small order of chicken nuggets and Lea Ann gives me her tater tots. We both munch all the way home. Lea Ann smiles at my eating... It makes her happy. The day didn't turn out as bad as I thought it might have, but I bet I sleep tonight...
See you all next post! Thanks for riding along!