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!