Tuesday, September 16, 2014
The home health nurse still comes to the house daily. She is worried enough about the clots that she starts doing blood pressures and all on the left side. The right side is where all the clots are. I am still sore in the neck and shoulder area. Stiff as if I slept on them wrong, but the feeling doesn't go away through the day as it usually would. I am told that was a side effect of the clots. Until that time, I had been told to look for swelling and redness and fever in the area. Those were the warning signs of clots. I had none of that. No redness, no swelling that could be seen and no fever in the area. All I had was stiffness and soreness. Had the port been able to draw blood it is quite possible that the clots would have gone undetected. Not good. Not good at all.
During this time, Lea Ann's father and sister, Ed and Mary, had been planning to come out to visit and check on us. This is a very big deal. They are going to fly out from Illinois to Phoenix. Why is that so big? Because Ed has never been on a plane before. He would always rather drive. Planes were just not part of his life. I have been told that he had told his wife that they would go to Hawaii just as soon as it was possible to drive there. The issue right now was that a drive from Illinois to Phoenix takes two to three days unless you drive straight through. A flight out is about 3 hours... So flying it was for two reasons. One, they get there faster, and two, Ed had had a medical procedure done not long before and he was still recovering from that so a straight through drive wouldn't have been safe or a good idea. The fact that he was going to make his first plane trip to come out to see and check up on us is a HUGE deal. It meant the world to us both! This will be woven more into the story more in just a little bit.
Two days later, I am back at the hospital getting all checked into out patient surgery. All the usual things are happening... Kind of. Everything is being done on the left side. Blood pressure, IV, pulse-ox... everything. In fact, they put a red bracelet on my right wrist telling them to not do anything on that side. That is understandable, but the vein they have to use in my left elbow runs cross ways.That means the IV is going across my elbow instead of down the side of it. It also means that I can't bend my arm or it will block the IV. They had tried to get the back of my hand and my wrist with no luck.Three or four sticks for an IV are enough for me, and I said so. That's why they went to the elbow. After all the preparations and the visit from the anesthesiologist, the doctor comes in. He explains what will be happening and that it will take about 45 minutes as opposed to the usual 20 since there is a removal and a replacement. Lea Ann and I both nod and understand. It is what we thought. Then the doctor steps outside the curtained off area and asks Lea Ann to come out too. This is where it gets scary for her. The doctor says that this surgery will be touchy and that she should make sure she says goodbye to me before I get taken into the operating room... Just in case. What?! Why? Well because this surgery has a good chance of breaking off a part of the clot and if that happens and it gets into the bloodstream it will be... bad. Now Lea Ann is frantic. She is all alone. None of the kids came with her because we thought this was going to be a cake walk. Now suddenly there is a good chance her husband might die on the table, outpatient surgery or not. He asked her out here to tell her so that it would not work me up. That makes sense, but how can she now not show the worry to me? She puts on her best smile and comes back into the room. She takes my hand and just stands there as we watch a little TV waiting to go in. As they come in to take me, she leans down and kisses me and says she will see me later. I kiss back and say yes she will, but I don't notice how misty her eyes are. As soon as they take me in and she is taken back to the waiting room she is immediately on the phone. The first people she called were her father and her sister in Illinois. She was frantic. Her father told her to call and get someone to get over there to be with her right now. Her next call was to the boys, specifically Bill and Eddie. They work nearby and were living with us at the time. She explains to them that she needs someone to come to the hospital... Now. To the boys credit, they are there within 20 minutes to help support and comfort Lea Ann and be there for me too, even if I didn't know it at the time. This meant the world to Lea Ann and when I found out after the fact, to me as well. Shows the love and support a family should always have. With everyone there now, they sit and wait. A little over an hour later I am in recovery. The port was successfully removed and the new one put in... and most importantly, NO complications. This is when Lea Ann told me about her little conversation with the doctor out in the hall and why the boys were at the hospital when I got out. I am glad they didn't tell me before hand. It would have worked me up into a little tiny ball of worry and nerves.
Now start more new medications. Blood thinners. I have to start taking Warfarin pills. On top of that I have to get two shots a day in the belly. The shots are Lovenox, another thinner. The hope is that the thinned blood will assist in the erosion and disappearance of the clots. I'm still allowed no strenuous activity which is nixing physical therapy for now. I am told to be EXTRA careful, too. Even a nose bleed right now could be serious because now my blood will be thinner and it may not clot as it should. I could lose a lot of blood and pass out or worse. They are setting me up to go to a Coumadin Clinic daily to monitor the clotting factors in my blood and to modify the medications accordingly to keep it within limits and not get out of control. I will start going to that clinic in a week or so. We have to get the thinners into my system first. Just be careful and try not to cut my self or have a nose bleed or even get a bruise. I also have to watch what I eat. Green leafy vegetables give Vitamin K with counteracts thinners, so I have to stay away from those. Wow, they are serious. I guess this is a bigger deal than I thought.
Everything seems to be going OK for the next couple of days. Then the nose bleed started. I have had issues with nose bleeds ever since I was a kid. The oxygen was drying out my nasal passages and when I scratched it, it started to bleed. We tried to get it to stop and did get it to a few times. Once by stuffing Kleenex up my nose (found out later that is not a good idea. It can actually cause it to bleed more when you take the Kleenex out, it rips off the new clots and starts the bleeding all over again). Then it started again and I pinched it off and used an ice bag and it stopped again. The next day they send me to a lab because they need to take some blood to get what is called an INR count. This counts the anticoagulants in the blood. The higher the number, the thinner your blood is. Typical INR in people not on thinners is around 1.0. People on thinners are shooting for 2.0 to 3.0. The Coumadin Clinic helps to monitor and adjust the medicines to keep it in that range. I get the blood taken and they make sure I stop bleeding, then we go back home.
The next day is when Ed and Mary are to arrive in Phoenix. Early that morning (at like 7:00am), we get a call from the chemo doctor. It is rather odd for a doctor call that early in the morning, and we know what visuals that conjures in most people's minds. She has just gotten the blood test results and wants to know where we are in relation to the nearest hospital. Why? Well, my INR was high so that they want me to go to the Emergency Room. They will call that ER and let them know we are coming. We say OK and Lea Ann and I leave soon after, scared as hell once again. We reach the ER and they take me directly back into a room. They start asking me if I had been bleeding, and it just so happens that I had been having another nose bleed, so they give me a clip to put on my nose for direct pressure. In the mean time, they have taken more blood and now there is a girl in the room who has started filling out admission paperwork. We start asking her questions, but she can't answer them. She is just doing what she was told. The doctor comes back in, so we ask him. I am to be admitted into the hospital. My INR is so high they are going to have to give me plasma transfusions to help spur coagulation in my blood. WHY?? What is going on?? We just has blood work done. The lab results that came back from the blood work yesterday show that my INR was over 14.0. WHAT?!? That has to be a misread doesn't it? If it really were that high wouldn't I be bleeding out my eyes or something? They take more blood and are rerunning the numbers as a double-check. A little while later the doctor comes back in and says their lab shows a current INR of 7.8. Still Exceptionally high, but not high enough to have to be admitted. They are going to give me some Vitamin K. I take the vitamins then we have to wait for them to take effect. During this time Ed and Mary arrive at our house. They have to just sit and wait for us to get back, but Lea Ann is giving them updates and information as we get it too. We end up sitting and waiting in the ER for another four hours waiting my blood work to show some response to the Vitamin K. Once there is a drop in the INR, they release me and we can head back home.
Once we get back home, we greet Ed and Mary. We are SO glad they are there and we let them know it. Ed had undergone a procedure not long before they left Illinois that had left him sore and having to walk with a cane. He is in remission from bladder cancer. They stayed with us for several days. Talking and listening and laughing and even going out. We went to a local steak house and had a family meal there. It was one of the first times that I had gone out to do anything outside of medical stuff since my surgery. We even took some pictures. Ed and Mary's visit was a huge shot in the arm for both of us. That, added to the fact of how quickly the boys responded to Lea Ann's call from the hospital that day, just showed again how a family is supposed to come together and work as a team to support each other in times like this. I will never forget that. My memories may be a bit out of sequence or a little off here and there, but they are still there. I love them for it.
Here we thought we were through the worst of this, and now we're told that anything I might do could now make me bleed out, or dislodge a clot, or any number of other things that could kill me... Will this ever start getting better?
Please check back soon for the next entry! I appreciate your sharing the journey with us!
Wednesday, September 3, 2014
And now back to our journey...
Chemotherapy continues once a week. Every Monday morning we go in and I get hooked up. It takes three to four hours most times with all that is being done. That is typical. The people that work at the center are absolutely great. I could not have asked for better. The people getting the chemo with me are just as nice and very personable. Everyone smiles and talks and is very.... Real. That is the best word to describe them. Every one of us in that room, the patients and their caretakers and watchers, are sharing a very raw experience. Talking helps to pass the time and take the mind off the sickness. Honestly, at least for me, the talk tends to center around anything else. I would rather not talk about the cancer or anything related to it. I want to have small talk and chit-chat and joke around and smile and laugh. That seems to work for me, and others seem to fall into step with that, so I take it as a sign that we are having similar thoughts. Every afternoon, Monday through Friday, I have to come back to the same center for the radiation treatments. We wish that I could have gotten times loser together on Mondays, but schedules are schedules I suppose. We do tend to cheat and ask the nurses to ask the radiation side of the house if I can sneak in early for the therapies on those Mondays so we are not driving so much. It works maybe half the time. We'll take anything we can get.
One thing that we are finding is that, contrary to what we expect, I actually feel better after chemotherapy. We have no idea why. Neither does the chemo doctor or the nurses. They are chalking it up to each person responds in their own way. I am one of the lucky ones. I'm not getting sick, at least not yet, and I am not losing much hair, though I do notice quite a bit in the shower in the morning, but I am definitely not going bald. Lea Ann thinks that the reason is that when I get chemo, before they start the drugs, I get a large bag of hydrating saline and also a bolster of Magnesium. The day of chemo through about two days later, I tend to feel really good. Appetite is up, mood is better, energy is up, I even try harder at physical therapy and my exercises (when I do them). Come about Wednesday evening I start losing that steam and get tired quicker and run down. Appetite gets less and my moods get more erratic. This happens every week that I have chemo. Based on what I had heard and seen, I really am a lucky one in that regard.
Radiation is a daily 30 minute drive for a 10 minute procedure, then 30 minutes back home. I understand it is necessary, but it gets tiresome at times. We want to make sure nothing comes back so they are doing this to clean up anything that may have been left. I admit that I get a little down on myself during these sessions. To be honest it is over a pretty minor thing, too. I can't sit up on my own after the sessions. I lie on my back for the treatments, but I can't sit up from that position. I always need help. That bothers me a lot more than I want to admit. I mean I know that my stomach and back were both cut open and it will take a while for that type of mobility to come back, but I still think I should be able to do it.
The third Monday of chemo. I go in as usual, but they want to take blood for blood screening before chemo starts. This should not be a big deal. They can take the blood from the power port before starting to infuse the chemo drugs. It can all be done through the same single stick. I am starting to like this power port idea. They prep the port site, spray the cooling gas onto the sire to deaden it a bit so I don't feel the stick, then insert the port tubes. All the same as usual. The nurse leaves, then comes back with several vials to fill with blood for the tests they need. The connects the syringe to the port and starts to draw some blood. Nothing comes out. In fact, when she attempts to pull back on the plunger of the syringe, it will not move at all. She frowns and tries a few more times, then sighs. I ask if there is an issue. She says most likely she missed the port with the tap needle. That means she has to take it out, and I get another stick. Oh well. I can take another stick. The nurse says she is going to get the shift leader to try the next stick. That makes sense to me. Get the most experienced person to handle the possible problem issue. Seems to make sense to Lea Ann too. Soon the shift leader comes over with the longest tap needle they have. Its almost two inches long. That is a little intimidating, but the nurse puts me at ease. She preps the area and sticks me again. This time she tests the entry by injecting a bit of saline into the tube to make sure it is in and seated properly. It is. Now we'll try to get the blood drawn again. She sets up the hardware and the vials and tries the blood draw. Same issue. Nothing is coming out. Again the plunger in the syringe will not draw anything out. Nothing at all. The nurse frowns and tries again without luck. She tries infusing the saline again and it does take that in without any issue, but it will not draw no matter what they do. She mentions that in order to save time, they will draw the blood from my arm and she will ask about what would cause this issue. I agree and they take blood out of the crook of my elbow, then hook me up to the usual for the chemotherapy. After that, I actually forget about the blood draw issue. The rest of that week goes pretty much as usual, however I start noticing that my neck is getting sore and stiff and my right shoulder is starting to hurt. Especially in the mornings. I used to get that way from time to time, so I just thought I was sleeping in the wrong position and was getting stiff. After all, I was now having to sleep on my back all the time and also with blocks under the head of the bed so I was at a head up angle due to the surgery.
Week four of chemo. We go in at the usual time and do all the usual set up and everything. The nurse says they want to try to draw blood again. I suddenly remember the issue they had the week before and ask if they figured out what the problem was. She says they think it may have been clotted off and are hoping that it has cleared in the week since. They hook me up again and... same conclusion. Nothing will draw at all. They call in the doctor to look at it. She tries and gets the same result. Now Lea Ann and I are getting a little worried. The doctor takes us back into a private exam room and pokes and prods on the site, which was pretty uncomfortable, but needed. Her thinking is that the port has clotted off on the draw side. If that is the case they can't guarantee that the chemo is getting into my system properly, so she is suspending chemo today and sending me to have an ultrasound done on the and around the port. Now I am worried. They must have a worry about it too as I get an appointment that afternoon at a local imaging center.
Two hours before radiation, I go to the imaging center and get called back into the ultrasound room quickly. The ultrasonographer comes in and stops short when she sees me. Apparently she was expecting a female. I explain the situation and she starts the procedure. She small talks during the 20-minute procedure, then reviews her work. As she is looking at it, I casually ask if anything looks odd. I really don't expect a response that I would be able to understand, if I get one at all. The techs are good at saying they are not doctors. However, in this case, she actually tells me that I have several blood clots throughout my shoulder, upper arm, and most importantly, in the Jugular Artery. She will be sending her findings to the chemo doctor in a few minutes and I am to talk to her about it after my radiation therapy this afternoon. She can't tell me anything else because she is not a doctor. Now I am even more scared. Clots are one of the things they were very afraid of when I was hospitalized. Now I suddenly have several, and with one in the Jugular, I am in major danger. I leave the imaging center and tell Lea Ann what was found as we drive back to the cancer center. She is as scared as I am. All it takes is one of those clots to break off, and I could very well die.
After radiation, which was unusually quiet, we are escorted back into the chemo doctor's office. She explains that there are four good sized clots through my shoulder and neck. The stiffness and soreness I have been feeling were side effects of those clots. It is likely that the power port was set too deeply and my body clotted off all it could. I was told that I am a hyper blood clotter anyway, and chemo can make that even more so. She is canceling my chemo for today and for next week. She will be calling the surgeon to set up an appointment for me to have this port removed and another put in in the left side of my chest. She is also putting me on Warfarin pills to thin the blood as well as Lovenox shots that will need to be administered in my belly. These will thin my blood and hopefully help to erode these newly formed clots. The medications will start the day after the new port is put in. The surgery will be set up for tomorrow or the next day at the latest. Later on I will have to start going to a Coumadin Clinic to have my blood monitored for the thinner factors in it and to manage the medication, but that will be in a week or so after the replacement port is installed. In the mean time, no excess movements or exercising, stay relaxed and keep the blood pressure down. She is not expecting any issues with this, but then again, she was not expecting this to occur. She reminds us that every situation is different. She will have to surgeon's office call me with the time of the port replacement surgery.
The drive home is tense. There is not a lot to say. Lea Ann and I both know what a blood clot can do to a person, and that is now a very real possibility for me. When we get home we have to call the physical therapist and cancel the session and give him the reasons and findings. The home health nurse is informed as well. She explains the issue and possibilities to us, and suggests that I stay in my recliner as much as possible move around as little as possible. This situation could get very bad very quickly.
Now I am really scared.
Thank you for reading along and coming on our journey with us. Please check back for my next entry. I promise it will not be as long as the last gap!
Saturday, August 23, 2014
Also, a new blog post will be coming VERY soon... I just have to put the finishing touches on it. Thank you all for sticking with me! It has been one BUSY summer.
Saturday, June 21, 2014
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!
Saturday, May 31, 2014
Since both doctor's have offices in the pavilion connected to the hospital, we set them up for back-to-back times early in the morning. That way we only have to get out once and get them finished early in the day and have the rest of the rest of the day to relax other than the afternoon home health and physical therapy visits. I wake up a little earlier than usual. Ever since I was a baby, doctor's office visits have not settled well with me. Mom says that when I was a baby, as soon as we drove into the parking lot of the doctor's office I'd start squalling and would not stop until we left and got out of the lot again. Anyway, I go in and get ready trying not to wake up Lea Ann. She deserves a little extra sleep. I am able to shave, shower, and shine on my own this morning. That hasn't happened very often, so I'm slightly proud of myself. Weighing myself drops that pride a bit. Still losing weight. I'll write down the weight in the log after I get dressed and take all my pills and breathing treatments. Shorts and a t-shirt with sneakers are the look of the day, however they are looking pretty big on me these days. Last moves in the bedroom are putting on the oxygen, then grabbing the plastic shoe box that has all my medications in it. I slip quietly out of the bedroom. I will wake Lea Ann after I am done with all my morning treatments and meds. I grab a small glass of orange juice and sit in my recliner to take the many pills, then the COPD medication for the lung that is still partially un-inflated, then my blow-by breathing treatment using the nebulizer machine that was delivered yesterday. The nebulizer treatments take the longest. Maybe five or ten minutes. As I am taking the treatment, Lea Ann emerges from the bedroom to say hello and give a good morning kiss. As she puts together her usual morning coffee, she compliments me on doing all my morning stuff alone this morning, but adds that she is always there if I need her. I smile at her and say I know and thank her for the compliment and also the reminder. After she finishes her morning routine, which usually ends up being quite a bit shorter than mine, she takes a some time to sit out back in the early morning sun and relax with her coffee before we have to leave. It has started out to be a rather nice and uneventful morning.
After transferring to the mobile oxygen tank and the pull along cart, we are off to the follow-up visits. First stop is the oncologist office. She is the chemotherapy oncologist but is speaking for the radiation oncologist as well. She asks all the usual questions about how I am feeling, checks all the surgical sites, and listens to my heart and lungs. then she sits down and lays out the next steps for us. Since the surgeon took out 31 lymph nodes when he removed the partial esophagus and the upper portion of the stomach, they are suggesting what she called "mop up" therapies. Just to kill off any stray cells that may have been missed and do their best to make me as clean as possible. What this will include is six once a week chemotherapy treatments along with 30 radiation treatments, Monday through Friday during that same six week span. She has already talked to the surgeon and next week he will place a power port under the skin in my chest. That port will be used for infusing the chemotherapy and also can be used to draw blood for tests and stuff. This will keep me from having to be stuck every week for blood tests and the chemo, plus it is overall generally easier on the system. The surgeon will explain more about it in the later appointment. Lea Ann asks what kind of chemo I will be on and what the side effects may be. We are told I will be on what is called 5-Fluorouracil (called 5FU) and Cisplatin. They will give me a good charge up on hydration, then give the chemo in that order every week. As to side effects, there are many that are possible. Those include the usual that people know about... hair loss, nausea, and loss of taste buds and other fast growing cells so it could even affect my finger and toe nails, but there are others as well. Some of those include mouth sores, bruising or bleeding, blood clots, anemia, diarrhea, numbness or tinglings in the hands and/or feet, changes in how my kidneys, lungs, liver and even my heart might work. We just have to keep in mind that these are all possible side effects. Everyone reacts differently, so we will basically just have to wait and see. All that is a bit much to take in all at once. I feel numb already. I know before my father died, he had chemotherapy that was delivered via a pump that was placed under his skin and fed directly into his liver. He didn't lose his hair, only got a little sick, but he was anemic and lost his taste buds. I'm not looking forward to this. Just before we end the appointment, the oncologist asks us to tell the surgeon to make note that she wants him to leave in the infusion lines when he places the power port. It is now scheduled to be placed the same day I start chemo and that will keep me from having to endure another stick immediately after an out patient surgery and make it easier on the chemo nursing staff as well. Lea Ann makes note of that and we end the appointment. I am still feeling gut kicked. I had hoped that the chemo and radiation would not be needed. I understand the reasoning behind why we are doing it, but I am still bummed about it.
Next appointment is the surgeon. He is a nice enough guy, but as I have stated before, he is very blunt and to the point. He does all of the checks that the oncologist did, but pays much closer attention to the surgery sites and scars and pays special attention to the J-Tube site. it is still oozing quite a bit and when the dressings get changed it is bleeding each time. He looks it over, changes the dressing himself and adds some ointment to the dressing to help the site heal as well as to keep the dressing from sticking to it as bad to help keep it from bleeding. He also notes that it is getting some granulation tissue around the entry, but that is normal. It is the body's natural defense to being hurt, and since the tube should not be there, and the dressings keep making it bleed again, the granularity tissue is forming to protect the site. We just need to keep an eye on it and inform the home health nurse about the change in dressing it. Also make sure we flush The J-Tube with diluted water at least once a day, but he would prefer twice. The bed sore I had is almost completely healed as well. He mentions again how quickly I seem to heal. He orders up a few extra blood tests, and hands that order to Lea Ann. The blood drawing lab is just down in the lobby so we can hit it on the way out. He then asks if we have any questions or concerns. I am not talking much, but Lea Ann asks all the questions I would have. Like how long will it take to put the power port in and how long will it stay in? He reiterates that it is an out patient procedure and usually takes 30 to 45 minutes, plus recovery. We tell him of the oncologists request to keep the infusion port in after initial placement because I will be getting chemo that same day. He makes note of that in his tablet. He also says he tends to drag his feet when it comes to taking out the power ports and the J-Tube. He likes to make sure they will not be needed anymore before they are removed and if that entails keeping them in another month or two or however long, so be it. Better to be safe than sorry. Plus it puts less stress on the body than taking it out then having to put another in. Understandable. Some people have kept them in for a year or more. God I hope not. We ask him about side effects of the chemo and radiation. He says basically the same thing the oncologist did about the usual side effects and how every person reacts differently, even if they are in the same family. Everyone is different. It is starting to sound like a standard answer they are trained to say when asked that question. I am not one that likes getting "standard" answers. I'm a details guy. The "wait and see" attitude is hard for me to stomach, no pun intended. The power port will be put in the middle of the next week and chemo and radiation will start that day as well. The scheduling for all that will be handled by the clinic at the time I have my first sessions. Be at the hospital at 6:00am for the port insertion, then it will be straight over to the clinic to start chemo and radiation. Expect to get home late afternoon that day and don't make a lot of other plans for the day he says... Terrific... I just love hearing that. As he is leaving he says he is impressed in how I am doing physically and says the mental part will come around in time. He reiterates that this is the largest fight I have ever been in and I am holding up quite well. He is proud of me... and of Lea Ann too. We are troopers and he likes seeing that. We shake hands, he says call if I have any questions or concerns and leaves.
Down to the blood draw lab on the way out of the building. That is pretty much a non-issue as I used to give blood a lot when I was younger at the Red Cross blood drives. I'm not an easy stick though and it takes them usually two or three tries before they get a good vein. The report will be back to the doctor in a couple of days as none of them were requested stat, and there is a new test he has requested that is specific to blood clotting factors. They have not seen this one much yet and don't know for sure how long it would take. Maybe a week at the outside. I thank them and Lea Ann and I are out the door and on the dusty trail back to the house. She asks if I am hungry and want to stop for anything. I'm really not, but I say I could eat as I am sure she is hungry. We stop at a Jack-in-the-Box and she gets a quick burger fries and I get a 4 piece chicken nugget meal with a small fry. I eat maybe a nugget and a half and a few fries and drink about half my tea. I just do NOT feel like eating so I say I am full. Lea Ann gives me that look of understanding but I can also see she is worried about how much I am eating, rather not eating. I am sure she will be talking to the doctor about that next time. I may get put back on getting extra nourishment via the J-Tube. Again, I hope not but I also understand why if it is needed.
Off toward home we go. Home health and physical therapy await me later today. I am not looking forward to either. These doctor visits always seem to bum me out. When I get the bummed feeling, I just go deeper into my hole... I wonder if this will ever end.
Thanks for reading along! Please feel free to give this link to anyone you think may be able to use this information. I would love to continue to reach and help others understand what goes on inside the head of someone like myself that has or is going through this. It is not an easy or a fun time. With luck this will let them see they are not alone, they have support all around them, and they are not the first to maybe have some of the feelings they may be having. Thanks again, and see you all next post!
Tuesday, May 27, 2014
After a couple of days that were basically uneventful, the first day of real physical therapy is at hand. I admit, I am getting very comfy in my recliner with maybe a dog lying beside me in it. I'm quite comfortable and content sitting on my butt and watching TV and using my laptop. I'm home. Why should I have to be reminded more about my condition than I already am? I have to see the walker and the oxygen tubes and tanks and pump and the home health nurse here almost every day and daily or more checks of the dressings and the surgery sites and BP and weight and breathing treatments and the millions (it seems) of pills I have to take daily... even a few of the breathing therapies on those silly little things we brought home from the hospital, but not many. I want to forget it all and just get back to normal. In my mind, the best way to do that is to watch TV and sit in my chair and do little to nothing. In the back of my mind I am actually noticing that the weight is still rolling off and that is because I am not wanting to eat. I'm just not hungry. Food has no appeal to me at all. At this rate I will be losing 7 to 10 pounds a week and I know that is not good, but I also know I was quite overweight... So I have it to lose. Or had. I'm also noticing my look in the bathroom mirror each morning. There is a large loss of weight that is already quite noticeable, but I'm also starting to notice the loss of a LOT of muscle... My build. Even my butt and legs, which I had been told were a couple of my better features. The "skinny and feeble" look is starting to settle in. I'm not liking that at all.
After the now typical morning routine, I sit in my throne recliner in the living room in front of the TV and await the coming of the physical therapist, and the home health nurse. I wonder who will come first. Doesn't matter who gets there first, it's just something I wonder about to amuse myself. If the therapist gets there first my BP will likely be messed up and maybe my oxygen saturation. Who knows? It doesn't take long to find out. Doorbell rings... Lea Ann answers and its the nurse. She is a nice young woman. Very personable. Very professional. I have no complaints about her. Lea Ann seems to like her too. They get along well and talk quite a bit in a chit-chat fashion while I go through the usual battery of checks. BP is the best it has been. Just a tiny bit above normal. Oxygen saturation is good. So good in fact that she decides to dial down the oxygen a bit. Fine with me, just as long as I tolerate it OK. Should not be a problem. She is still hearing some crackling when I take deep breaths, but she says they are seeming to get less and less. So see? I AM getting better. Why do all this extra stuff? Then I remember the vision of myself in the mirror. There is a war starting in my brain. The one side that says I am getting better doing just what I am doing now, versus the part that doesn't like what it sees in the mirror. The part that wants to get back what I have lost. The part that is the merest spark of what I used to be... of how I used to feel. Maybe, just maybe, the Brian that was here before this diagnosis and surgery is still inside and is just now waking up and starting to try to fight his way out. I notice that, but just file it away to maybe look at again later on. The "stay the current course" part of my brain is still far too strong to succumb to a single fleeting thought. The nurse finishes her stuff, I sign the paper, well actually I sign her iPad with a stylus thinking that this is rather cool. I am a geek when it comes to electronics and toys like that. Before she leaves she says she is going to start coming every other day if we feel comfortable with that. Lea Ann asks me what I think, I say that's fine. She still wants the daily BP and weight checks logged and also maybe the oxygen saturation. Lea Ann agrees to that, as do I, then she bids us a farewell until the day after tomorrow.
About an hour later the physical therapist shows up. He does the same type of lead-in paperwork that the home health nurse does. In fact, he mentions that he is in contact with her quite a bit about me and how I am doing physically. He mentions the log Lea Ann has been keeping, so she shows it to him. He makes mention of the weight loss. There is a little flare of that spark in my brain again. Just for a second. He asks how I have been eating. I say I have been, but Lea Ann corrects me. I have been eating, but tiny bits if anything. Not even doing much with the protein shakes. He mentions that the protein is what is needed to keep the muscle mass up, along with working those muscles... which we will start doing today. He asks how I have been walking. I have to be honest and say that I have not been walking a lot, but when I have been I've not been using my walker. I just go slow and make sure I am near a wall or door or chair to help support me if I get light-headed, but to be honest that has not happened lately. He asks where my portable oxygen is, and Lea Ann brings it our of my office. He hooks up the shorter hoses and turns on the tank and we swap tubes. He also puts his own pulse/ox monitor on my finger. He will be paying close attention to the pulse as well as my oxygen saturation levels as we walk. That is all we are going to do today. We are going to walk out front. Whatever I feel comfortable with. This will be used as my first benchmark or as a baseline. He will be beside me all the way. I have nothing to worry about when it comes to falling or passing out or anything. Passing out? Me? Never.. but I do admit that I've worried about that from time to time recently. He's a big enough guy that he could keep me from cracking my head open on the concrete or where ever I happened to fall if I did. He tells me to stand up, and I do. Apparently too fast. Have you ever gotten up too fast or maybe yawned while standing and had your vision start to dim and get shaky in the legs? That is exactly what happened. He noticed it right away and told me to sit back down. I do and the episode subsides. I look at him and smile a little sheepishly. Maybe I am not quite as strong or as far along as I thought. He says that it's OK, just slide up and sit on the edge of the chair for a minute and then stand slowly. As I do, he helps me up. No vision darkening this time. Hopefully it was a one time thing. We are going to start by walking down the hallway and back, then out back on the patio like we did last time he was here. We do that without much issue, but I do note that I am already breathing a bit harder and coughing occasionally. How could I be this weak after only maybe a month and surgery? I ask him that. He says, "Because your body was insulted and cut on and sewed back together and you are not eating or drinking much and you need to get some strength and stamina and breath back. Not to mention you are sill having lung issues. This is not an immediate correction. This will take time and work. That's why I am here." He lets me sit for a minute and catch my breath and also grab by rescue inhaler, just in case I need it. I get back up and head for and out the front door. I tell Lea Ann I will be back in a few minutes, and she says I better be and smiles. I smile back and walk out, pulling my little oxygen cart behind me. The sidewalk out to the driveway is flat and easily navigated. It is straight then a left turn and you get to the driveway. By the time I get to the turn, maybe 30 feet, I an starting to breathe hard and cough a bit and my oxygen saturation is dropping. 92... 91... 89. The therapist tells me to stop, try to relax and take puff off the rescue inhaler and take a few deep breaths as he increases my oxygen. As I stand there, the saturation goes back up into the mid-90's again. What the hell? I can't even walk around the house and to the driveway without having issues? How pathetic am I? The therapist seems to know what I am thinking, tries to pump me up a bit and asks if I am ready to start again. The athlete part of me seems to take over and says "Let's go." That part of me actually says it out loud. He smiles, claps me on the shoulder and says that is what he likes to hear, and off we go again. Once we get to the driveway, he checks my saturation level and pulse again. They are OK. Our driveway slopes down to the sidewalk and curb. It's not very steep or anything, but it is a slope. The therapist says that we will go to the curb, the turn around and go back into the house. I nod and start moving. By now my legs are shaking a bit and I am shuffling more than walking. Quite a bit more than I would like to admit. Getting to the curb isn't hard. Gravity is my friend. Well... I thought it was until we turned and had to go back up the driveway. I am amazed at how hard it actually is to get up a slope that small. I am shuffling and huffing and puffing by the time we reach the sidewalk back to the door. So much so I go into a coughing fit and have to stop again. The therapist is very patient and as soon as the coughs subside I start up again, without his having to prompt me. We walk the rest of the way back into the house and I basically collapse into my chair, again coughing and huffing and puffing. My legs are trembling as I sit and I am starting to sweat. The therapist says I did well for my first time. Next time we will go further. Oh joy... but at least I got through it today. I am a little down on myself because of how many times I had to stop and how weak I really seem to have become. Maybe this therapy will end up being a good thing. That is if I am able to live through it, and I tell the therapist that. He laughs and says he has no plans on seeing me die anytime soon, but he will help me get some strength and stamina back. All I have to do is trust him. Honestly, I find myself actually doing just that. No real idea why as I have only met this kids twice, but he seems to know his stuff and also seems to care. My instincts tell me I can trust him, and I trust my instincts therefore I suppose I trust him.
He finishes his paperwork, he and Lea Ann switch me back over to the in home O2 pump and shut off the tanks so they can be used more when I am out. That time will come within the next week or so when I go see all my doctors for my first post-hospital checks. The therapist stands up, shakes my hand, tells me not to be too hard on myself and that it will get better, and that he will see me day after tomorrow. We are going to do PT every other day to start. He reminds me that in order to get stronger I need to eat and drink with an emphasis on higher protein. He looks over at Lea Ann and winks and smiles letting her know he has her back on that issue, and she sees him to the door. The step outside to talk for a moment, then he leaves. She comes back in and asks me if I need anything. I actually ask for a protein shake and to turn on the ceiling fan. I expect both will help cool me off. My legs are starting to calm down and the coughs have subsided... I think to myself, "This is going to be harder than I thought..."
Thanks for reading along and I hope you come back for the next post!
Sunday, May 18, 2014
Waking up after my first night at home was almost surreal. Like the last three weeks had not happened. In that sleepy twilight right after a person wakes up... In that small period of time that the mind can't easily pick out reality from the sleepy subconscious place where our dreams reside... My mind actually is able to forget the recent events and the physical issues I have endured. I am... me again. For just a very short time while my mind clears and starts the differentiation between the real and the dreams... I am me. The old me. The me before cancer. Damn, this feels good. Maybe I dreamed all this and now I am finally waking up. Slowly my eyes open. Lea Ann is still asleep next to me. I understand why some people enjoy watching others sleep. So beautiful and peaceful. Looking around the room, the way the light is filtering through the curtains and mini-blinds lets me know it is still very early in the morning. Not long after sunrise actually. I can hear the music from the radio that we always play at night. It helps to drown out the sounds that tend to wake us up, like my CPAP machine, or the the dogs of the man that lives behind us, or the sirens that travel up and down the major road we don't live that far from. It's our alternative to white noise. Plus it has a beat and you can dance to it. I also slowly start to notice a strange new sound. A deep thrumming hum. That's odd. Anyway, as I continue the early morning wake up, the first morning yawn comes on, and what usually accompanies that? A good stretch. So I do... and reality lands on my head, or rather on my abdomen which in turn quickly shakes up my brain. The stretch causes me to arch my back crunches the incision there and stretches out the incision on the stomach. Not to mention that the yawn is not a good one as my breathing still is not right and I can't take a full intake of breath. Reality is back... Dammit.
Time to get up because Mother Nature has decided that it has been too long since I have been in the bathroom. I am currently unable to sit up the usual way in the bed, in the sit-up style as most people do because my stomach is far from ready for that, but I have to get up. Rolling slightly onto my left side, I put my elbow on the edge of the bed with my hand up in the air. With my right hand, I grab the left and try pressing down, using it as a crutch and as a lever too. Slowly I am able to get into a sitting position, but my damned arms are both shaking like hell by the time I am. Luckily the mattress we have is one of those that doesn't transfer movement, so Lea Ann is able to stay asleep. The walker is folded up and leaning against the wall next to the archway that goes into the bathroom. I reach over and grab it, pulling it over and unfolding it, albeit quietly. Pulling it in front of me, I use it to stand up slowly. Legs still are not quite right and not nearly as strong, but they are working. I have to stand for a few seconds to gain my balance and make sure that I don't get light headed. If I am going to fall, I want it to be on the bed. Soon enough the feeling of stability comes and I shuffle into the restroom to get a little relief.
Later that morning I eat. Not a lot. Just a single packet of oatmeal. Lea Ann attempts to get to to drink a protein shake, but I back away from it after a few sips as usual. I hate that aftertaste, no matter how much Lea Ann tries to cover it by adding chocolate syrup or fruit or whatever else... Someday maybe I will get used to it, but not today. After bringing me the shake, Lea Ann goes into the bedroom comes back with the BP cuff, the pulse-ox monitor and the log for my stats. She used to be a CNA several years back in Illinois before we met and knows how to take BP and all. She is taking this logging of BP, oxygen saturation and weight very seriously. BP is down for me but still a bit higher than usual. it runs high in our family as a rule. When I was 18 it was as high as 165/100. Its not that high today, but still above average. Oxygen levels are in the mid to high 90's, which is very good, but I do still have the oxygen on. My weight this morning was right around 240. I have lost 120 pounds since originally seeing the doctor about the problems eating and swallowing about 5 months ago. I'm not too worried about it, but Lea Ann seems to be. I'm dropping weight like a bad habit. She has even mentioned that she wonders if I may be developing an eating disorder. If it keeps up I am sure she will bring it up to the home health nurse and the doctor at one of the myriad appointments in the near future. I just need to find a less radical diet plan. She is also worried because I am still not walking much and talking even less. Not to mention I am still not using the breathing therapy tools they sent me home with. And she is right in all regards, I am just not seeing it. I just want to sit on my butt in my recliner and watch TV. I'll get better over time. Little did I remember that the physical therapist is coming today. That means so much for sitting on my butt. At least for a while after the therapist gets here.
Later that morning the physical therapist arrives. A big muscular kid. Taller than me and maybe half my age. He's happy to meet Lea Ann and I and asks if I am ready to get some strength and stamina back. I do have to admit that my lack of strength and loss of the size I see in the mirror in my legs and calves and shoulders is a worry to me. As I have said before, I was rather proud how strong I thought I was. Now I can hardly sit up in bed or walk on my own. Now here comes kid telling me what to do to get better physically... This is going to be a tough thing to handle for my ego. He takes 10 or 15 minutes to fill out yet another set of paper work. Please sign here and here and here and initial here... Then he grabs his own pulse-ox monitor out of his bag and walks over to put it on my finger. He then asks me if I can stand for him. I am able to stand, after try or two and with a little support from him. He has my walker and sets it in front of me. I lean heavily on it. The oxygen saturation on the monitor is right around 90, maybe a a bit less. He asks if I am OK and if I need to sit down. A am a little light-headed, so I say yes and sit heavily. He adjusts my oxygen a bit higher and then helps me up again. This time he says we are going to take a little stroll around the house. We walk around the living room, up and down the hall, and even out onto the patio in the back yard. Less than half way through I am huffing and puffing and have to stop and rest for a moment. This happens twice more. This is really getting into my head. I am not strong enough to do anything. Great. This feeds my depression... When I get back to the recliner I sit heavily again and have to allow my head to clear as I was getting light-headed again. He praises me for trying and keeping it up to the end, but the ex-athlete part of me says I didn't do anything and that I should be ashamed... and I am. He says he has been cleared to come three times a week and the next visit will be day after tomorrow. The number of weekly visits will go down as I recuperate and get stronger. Three times a week is a good bit of work, and I will be walking and trying to get away from the walker AND the oxygen. I can live with that. Those two things make me feel so OLD... As the therapist and I say our goodbyes and shake hands, he and Lea Ann talk a bit, but they are out of my hearing range. At that point in time I had no idea what they were talking about, but looking back I can assume that she was asking what he might think would motivate me to start moving and doing things for myself. As I sit in the recliner, my legs are starting to get sore already and they are still shaking from the walking. This is not going to be fun. About the time the physical therapist leaves, the home health nurse shows up. They confer outside with Lea Ann briefly, then she comes in and does her checks on me... BP, oxygen saturation, she lowers the O2 on the oxygen lines too because the physical therapist had forgotten to, temperature, checked all the incision sites and the dressings, and listened to my breathing. This will be the usual for the next several weeks, at least until I am finished with chemotherapy and radiation. She is also going to help us keep track of the appointments we have and what is said and found out there. She is very good. Despite my mood, I find myself liking her and how she does things, and it seems Lea Ann does as well. It is always good to like who you have to work with, and in this case, we do. Gotta love the caregivers, and that includes Lea Ann, who is catching the brunt of my crappy moods. That is so not fair to her. I see that now, but then I didn't. Then I was still too deep into my own head and pity party to see it. I am such a lucky man to have her by my side. She is literally the better and stronger half of me. She is the lifesaver I hang on to when things are getting too overwhelming. She doesn't know it, and I never said it then, but she was, is and always will be. I have since told her that, but at the time I wonder how the hell she put up with me.
The rest of the next few days are uneventful and pretty much carbon copies of the first day back. I am not looking forward to the physical therapy that is to come as it will make me see how weak and frail I truly have become, but it is a need to make me get stronger too... I am very conflicted, and I am sure it shows.
Thank you all for reading along and I will see you again next post!
Tuesday, May 6, 2014
We got home fairly early in the morning, around 10:00 or 11:00 am. There is an appointment for the home health nurse to visit and start her daily routine early this afternoon. The medical equipment people will be coming to set up an oxygen pump today, too. That way I won't use up the portable oxygen tanks nearly as fast. They will be used for transportation away from home only. When I am at the house, I will be on the O2 pump. It will also have an attachment to put oxygen into the CPAP while I am sleeping. There is also a chance the physical therapist may call or come by today or tomorrow, based on what the home health nurse recommends.
One of the first things I want to do is shower. Question is, how will I do that? Standing for that length of time would be difficult, plus I remember when my father had his cancer surgery. After he had gotten home, he took a shower and the warm water and cool air made his blood pressure drop and he passed out in the shower. Scared the hell out of him, and with good cause. I'd rather not have that happen to me. I tell Lea Ann about it and she comes up with a good idea. We have one of those formed resin plastic chairs out on the back patio. She is going to bring it in and put it in the shower stall in our bathroom. It fits very well and our shower has one of those shower head attachments that has the hose so that you can take it down off the wall and use it by hand. So I can sit in the chair and shower myself. At least I can do something for myself. Lea Ann helps me take off the bed sore dressing then stays nearby in case I need her or something goes amiss while I am showering. No issues, but it seemed like I was in there forever plus 3 days. Getting out was a bit of a chore. The chair was a little lower than I was used to, so I had to use my legs more. Hanging on to the shower door would be a bad idea as it is glass. There are no other handles for me to grab, so I ask Lea Ann to help me up and she obliges without any question. I'm now out o the shower and shivering my ass off, but standing to dry myself is going to cause the same issue as standing in the shower, plus when I try to dry my hair, that will just make me dizzier. Another good idea from Lea Ann coming. She places a towel over the edge of the bathtub and tells me to sit there. It is near the plug for the hair drier too, and its right next to the radio which is blaring out my favorite classic rock music station. She is one smart cookie. I sit down and dry off the best I can. She dries off my back and takes it easy around the bed sore. I take the hair drier and dry my hair, that actually makes me tired and I have to stop two or three times to let my arm rest. Jeez... But I want to finish it, and Lea Ann can tell, so she lets me. I'm now all dried off and hair is combed. Lea Ann puts a fresh dressing on the bed sore and I grab a pair of sleep pants and a t-shirt, my usual wardrobe for several weeks to come.
Moving out into the living room, I sit in my favorite spot, my recliner, park the oxygen cart next to the arm of the chair and make sure the hose is out of everyone's way, then kick the foot out and lie back. This feels good. TV is on, and I have access to the DVD player too and our slew of movies and TV shows on DVD. Our dogs want to get up in my lap as they used to always do, but I am afraid to let them up right now. Afraid it might hurt. So I tell them no and the sit at the foot of my chair and just stare at me... KC, our Jack Russel, is actually sitting up begging to getup into the chair with me. KC was given to me by our sons as a Christmas gift in 2006, and he is spoiled beyond repair. Sorry buddy. Right now there is no way I am going to let you up here. Maybe in a few days. Lea Ann is watching and smiling. She tells me that while I was gone, all the dogs jumped up and laid on the seat of the chair, and Max, our Miniature Pinscher, hopped up and slept on the back of the head of the chair. No one else even tried to sit there. I suppose that is a good sign. Or they are all afraid to sit in my chair. Hopefully I am not that scary. I start to zone out and soon take a little power nap. Not very long but long enough to give a little refreshment. When I wake up, I hear a racket in the kitchen and soon Lea Ann is bringing me a protein shake. Ice cream, Ensure, a little milk, powered milk for the extra protein, and Hershey's chocolate syrup. I thank her and take a few sips. This is not my kind of shake... It has the Ensure aftertaste that we all love so much. Ick. I drink maybe a third or half of it then set it off to the side. There it will sit until it gets warm and Lea Ann takes it away. I still don't want anything to eat. I am starting to think that hospital food killed my senses of taste and smell as pertains to food. I can still smell that hospital food. and we are a 25 minute drive away. Long distance mind control via bad food. Must be some hidden diet thing for those of us that were overweight.
A little bit later on, the home health nurse arrives. Younger lady, very pleasant. She sits down on the couch across the living room and gets out her equipment and her computer tablet and her notes. After the introductions we get right down to business. That works for me. I am home now. The quicker we can get this done the better. I ask, "Why do I need this?" Because I am still recuperating and they have to monitor me for medical records and for the doctors. Fine. She asks me about my background and family history, allergies, previous surgeries, etc. Am I up to date on all my shots? I suppose so... really have no idea. She makes note of that and says I may be getting a few shots in the near future if they deem them necessary. Oh joy. Can we have any more fun? The nurse asks Lea Ann some questions about my surgery and recovery in ICU and on the floor. After all that is noted, the nurse comes over and starts to check me over. She does it while I am sitting in the recliner, so I can't really complain. And she is nice, so I play nice too. She checks the usual. Temperature, pulse, blood pressure, oxygen saturation by using that little thing that fits on your finger like a clothes pin, she listens to me breathe, checks the dressings I have in various places... Obviously the incision sites, the one on the bed sore, and where the drains were in my sides, and the J-Tube site... All look good. She goes back to her notes and writes it all down. I ask her why she writes it instead of entering it directly on the tablet. She says this way she can make notes her way, then transfer them into the system in the way the medical staff wants. That way they both understand better. Makes sense to me. She reminds me to not miss ANY of my medications and asks Lea Ann to help me remember. I know she will. I will do my best to not forget. Besides, this recovery and sickness is about all that is on my mind most of the time. How can I forget? She also wants Lea Ann to pick up a pulse/ox monitor. a blood pressure cuff, and a scale for me. In their talking, the nurse found out that Lea Ann used to be a CNA and knows how to take BP and use the pulse/ox monitors. She would like for Lea Ann to take all my vitals every morning, including my weight, and put them in a log so she can use that as a good baseline and also check our numbers against hers. It will be a good baseline. Lea Ann has to go to Walgreen to get some prescriptions for me anyway, so she will pick that stuff up while there. The last thing she has to do is give me a shot of heparin to help keep the possibility of clots down. She pulls out the needle and I get a shot in my belly. Luckily that part of the stomach is still numb, so I don't feel anything at all. As she is packing up she says she will be here every day this week and maybe next, then it will start to slack off. Like every other day, then every third, etc. Until I am well enough that they can discharge me from home health. She is also going to call and ask the physical therapist to come over tomorrow and get things set up to get me back on track as pertains to getting some strength and stamina back. She says she will see us both tomorrow, I apologize for not getting up to see her out, but Lea Ann walks her to the door.
A little while later, another knock at the door. Home medical equipment is here to set up the oxygen pump and all the tubing and the connection to the CPAP. He is shown in and shown the bedroom where the pump will reside. He brings in two or three boxes and three more of the green oxygen tanks. The pump is a big white plastic looking box on wheels. As he is taking it out of the box, I ask if I have to pull that thing around with me. He says no, it has to be plugged into the wall outlet, so he will give me enough hose to go anyplace in the house I want. I just have to be careful with the air hoses and remind everyone in the house to not trip. He laughs and says otherwise I might get whiplash from getting the hose stepped on or tripped over. He gets it all hooked up and then shows us (really mainly Lea Ann) how to adjust the flow, how the hoses are connected and how the CPAP is connected too. Then he tests it on me as I sit in the recliner. No issues at all. Then he talks all over the house with the hose to make sure I have enough slack and then adds like 25 or 30 feet to it, just to make sure I'll have enough. He and Lea Ann wind up all the excess hose and put it by the pump so it will be available and not get snagged if I need it. The then goes over how the portable tanks work and how to use them, again talking to both of us, but more to Lea Ann. When ever the tanks get empty, we need to call them or tell the home health nurse and they will get picked up and replaced. This guy also brought me another walker. Not sure why, but I have to stand up and get it set to the right height for me and all. After that, he bids us a farewell and says to call if we need anything or have questions. I sit down heavily and lie back, stretching out. I am suddenly very tired. We've done a lot on my first day home and it's not even dinner time yet. It doesn't take long for me to fall asleep...
Thank you for joining me in this journey. Please come back for the next post!
Monday, April 28, 2014
Rolling down to the lobby of the hospital while Lea Ann goes ahead to get the car, I stay basically quiet which is not my usual M.O. I'm usually joking and talking, but not right now. Just not in the mood. We get to the ground floor and sit just inside the sliding door waiting for Lea Ann to drive up in our car. Once she arrives, we go outside and load the back seat up with all my new stuff. Time to get in the car. I try to stand up and my legs are shaking so badly I am afraid I won't be able to do it, but I will myself to it. I mean, come on! It's only standing for crying out loud. I walk slowly over to the car and start to get in, but I can't get in like a normal person does. I have to stop and turn my back to the car, then bend over and put my butt in first, sit down, then rotate around to slide my legs in. God do I feel old. Who has to get in a car like this? Once I get settled and get the seat belt on, they put the little oxygen cart next to my legs and the handle kind of digs into my side to remind me its there. The nurse bids me a farewell and wishes me good luck. I tell her thank you and attempt a smile, again not sure how convincing it was. Another issue running through my head is driving. Ever since ever I have been one of those people that always wants to be the driver. I don't like being the passenger. I want to be in control, but for quite some time into the future I won't be able to. I trust Lea Ann. I trust her to the moon and back. She is a great driver and I know she can take care of me and keep me safe, but *I* am the one that should be doing that. I need to heal FAST and get back to normal if at all possible. I make a small joke about not being the one driving and Lea Ann takes it in stride and jokes back, showing my that pretty smile and her laugh that makes me smile. And it works again. Its like a magic bullet straight to the heart. My mood lightens a bit as we pull away from the hospital. I am actually going home. There were times over the last 19 days when I wondered if I would ever see that place again,but here I am driving home with the love of my life, who somehow is sticking by my side. I decide that maybe, just maybe I am just a little lucky. I know I am far from out of the woods, but I have a great support in my wife and my family and my friends. It was kind of like seeing a candle flicker in the fog-filled distance. Just enough to get me moving a little. The candle light being her, and the fog being the depression that is all around. It is human nature to move toward the light. But it was still far away in my mind. The fog was still very thick and could hide that flicker still, too. There is a titanic battle going on in my mind. The part that wants to hold on to the anger and depression and hurt vs. the part that wants to be happy I am going home and that I am still alive after all. This battle will be waged for quite some time to come. Sadly.
It is a sunny day, as usual in Arizona. Maybe a bit on the cooler side for there as it was mid-February. I had donned a jacket when we were leaving, just to get that extra warmth. The music is playing in the car. Music is my sanctuary. Always has been. I can't play any instruments or anything like that, but I can listen the hell out of a song, and I do on a regular basis. Lea Ann says she knows when I am having a hard time because my music increases as the hard time increases. She is very right. I retreat into the music, and I have been listening to a lot of it while recuperating in the hospital. Put those ear buds in, turn up the volume and close my eyes and get lost in the music and usually fall asleep. That is where I escape the most. She knows me very well. I notice a lot more around us from the passenger side of the car. The trees, the sky and clouds, the birds, the people, the landscape... It's amazing what you actually don't see when you are driving. But I have to ask, is it because I just didn't notice it before, or is it because I am paying more attention now because of all that has been happening? Maybe a little of both. It is nice to notice more about your surroundings and appreciate them more. The saying is right, you don't know what you have until it is gone. In my case it wasn't gone, but it could have been. That forces a new perspective. I'm actually getting a little more excited about getting home now. Maybe even smiling a little. Not sure. Maybe I think I am but I am really not. Who knows? The ride is 25 minutes from the hospital door to our front door. As we pull into the driveway and a certain amount of that weight lifts from my shoulders. We are home. No one was trying to fool me or anything. We are HOME. This feels good. Lea Ann gets out and pulls my walker out of the back seat and opens it up for me then opens my door. I try once to get up and can't get enough of my feet under me to stand up. She offers her hand and helps get me right up.She tells me to start walking to the front door and she will be right behind me with the oxygen cart and to make sure I don't fall. We go in the house and I stop just inside the door for a moment to look around. Home. Its just how I remember it, just several new plants and cards around from the people that sent them while I was in the hospital. This is what I want. This is where I want to be. Home with Lea Ann and the kids and our grand daughter and our dogs. All the familiar people and sights and sounds and smells. Home...
Thanks for reading and please make it a point to check back for new entries!
Tuesday, April 22, 2014
So... A few rather uneventful days back in ICU. We are going through the daily motions... Morning rounds, breathing treatments, a few walks... and even starting to eat some solid foods again. Actually more like semi-solid, and the jury is still out on calling hospital food real food. It seemed to always taste and smell the same. ALL of it. Even the Jell-O. It may be because I really am still not interested in eating, but it may be that all hospital food IS that bad. After a few days the decision is made to send me back up to the floor.There is nothing really keeping me in ICU now since my saturation issues have been taken care of and everything else is looking pretty good. No real reason to stay, so on the morning of about the 17th day post-surgery I get moved back up to the floor. I now only have an oxygen line some of the time and one IV and that is locked off and only used sometimes. I'm now able to get up on my own and go to the restroom and even shower. Well kind of shower. It is in a shower with a place for me to sit. There is that hand-held shower head action going on, which I happen to highly suggest to everyone. Don't get me wrong, the getting up was still not easy and I had to move very slowly and such small steps. There is very little power or strength there. Mentally I am still not here. Very deep into my own head and not willing to do a whole lot, but at least I will be being released soon. Ad that is released to go home. They have tried again to talk me into going to a rehab hospital. Again I stopped that cold. I flat out refuse to go to a rehab hospital. Anything that can be done there I can get done at home with home health and/or home visits by therapists. After arguing with me about it and talking with Lea Ann about it too, they decide it will be OK for me to go home. Damn straight it will be OK. I am going home. No other option. They say my release will be tomorrow or the next day. So at most I will be in the hospital for this surgery for 19 days, 16 of which were in ICU. Looking back on it now a lot of things happened that could have made things much much worse. Things like the surgery itself and the 12 hours I was under that knife; the day of hell when my body went haywire on the third day after surgery that included heart rate issues, blood pressure (low and high), saturation issues and a general lack of much consciousness that day; the oxygen incident and subsequent oxygen saturation issues; a central line IV infection that was keeping my white blood cell count at a little more than twice the normal limit; my lung not re-inflating properly after the surgery and the bronchoscope procedure I had to endure; depression, anger and self image issues... SO many things to overcome, but with the help of my angel, Lea Ann, and the help of my family and friends, and the medical staff, somehow I was overcoming them. Slowly to be sure, but overcoming them... even though I did not notice it at the time.
Release day! Holy crap today I get to go home! I'm actually excited and a bit nervous too. I have gotten good care here at the hospital and going home is a bog step, but I feel I can do it. We are getting my stuff together to leave. We meaning Lea Ann is. I am lying there in the bed telling her to take this and take that. Some of the stuff I am saying to take she is a little leery of taking, so she asks the nurse while she is in the room doing her checks. Sh says, and I quote, "You are getting charged for everything in this room. Whatever you don't take we have to trash. Aside from the bed linens and towels and other hardware and such." Having heard that we are taking everything that is not mailed down. Gauze and tape and ointments... literally anything that is not nailed down. Everything in that room was used on me, by me, or for me, and if that nurse says what is not taken is trashed, we are taking it all. We will use a large majority of it up at home later on. After the packing is complete and Lea Ann has made a trip or two to the car to load the trunk, she comes back up and we get a final hospital visit from the surgeon. He is still marveling over how quickly I am healing, however he still says I need to exercise more. Honestly I probably should have been walking more. I don't remember taking one walk while I was on the floor, and as we know I avoided them in ICU whenever I could. Well, I will have to walk around the house when I get home so that will be enough. He gives me the do's and don'ts about the J-Tube that is still in my stomach. I have to flush it once or twice a day with warm water and let him know if anything seems wrong such as it not flushing or getting red around where it is inserted or if the sutures come out that are holding it in. They are NOT going to feed me through the tube at home unless My weight loss gets too much. At this point I am losing weight at quite a clip. I started this journey at 360 pounds. I am now down into the 260 or 270 or so range and still dropping. They will speak with the home health nurse that will be assigned to me as well as the physical therapist. I will be going home with oxygen tanks and they will install an oxygen pump at home as well. The tanks will be used when I am out, the pump when I am home. I will be given a walker for support, and a cane if I want one later. I have literally a plastic shoe box full of pills and breathing medications to take every day. Not to mention the prescriptions that we have yet to get filled. They brief us on all that and Lea Ann promises that I will take them religiously, as do I. Next up, we talk about the Power Port that will be inserted under the skin in the upper right side of my chest in a few weeks. This will be done the same day as my first chemotherapy session and it will stay with me until the therapies are complete and for a while after. The insertion will be an out patient procedure at the hospital, then I will go directly to the cancer center for the first round of chemo. The chemo medicine I will be getting is a combination of Cisplatin and 5FU. These chemotherapy sessions will be once a week for six weeks. To go along with that, I will be getting radiation Monday through Friday for the same six week period. That will put the end of my therapies sometime in the middle of April. Also, while at home, I will have a home health nurse coming once a day for a while, then she will slack off. I will also be starting with a physical therapist to help start regaining my strength and body mass. We shake hands and I thank him and away he goes. In comes the nurse with a little cart with a green oxygen tank attached to it. she leaves it at the foot of the bed. I'll be using that until the home health people deliver and set up the oxygen pump. Then the respiratory therapy person comes in and gives me my final nebulizer treatments for the lungs and breathing. I must say I am quite happy to be done with these. That one smells SO bad and seems to take an hour, then I seem to taste it for a while afterwards. Once those are complete, the nurse takes out the last IV and covers the entry point with a fresh gauze pad. I can remove it in 30 minutes or so. I excuse myself to use the restroom one last time and get dressed in my own clothes for the first time in more than two weeks. They are rather big on me now, but I rather expected that. I exit the restroom and settle into the wheelchair. They put the portable oxygen on me and show Lea Ann and I how to use and set it. Lea Ann smiles at me and asks if I am ready to go. I nod and the nurse smiles and off we go with everything else that she had not loaded into the care before hand. I have to get used to this part. I am one of those guys that always has to drive. Always. Until now. They won't allow it because of all the medications and all. Yet another thing taken away from me. Don't get me wrong. I fully trust Lea Ann and her driving abilities,, I just don't like not being in control. In this case, I don't have any wiggle room, so I just have to deal with it. We get downstairs and have to wait for Lea Ann to bring the car around. I thank the nurse for her good work and ask her to thank the rest of the staff for me. She says she will. Lea Ann drives up. The help me into the car and put the little oxygen cart beside me. The walker goes into the back along with my clothes and all the other stuff we took. The doors all close and away we go... Heading home after almost 3 weeks.
I considered this another hurdle cleared. Home will be a welcome sight and feeling. Lea Ann and our kids and the dogs and familiar surroundings and all. And my recliner. I am definitely looking forward to this.
Thank you for patiently waiting for this post. I will do my best to make the next one a lot more timely.