Tuesday, May 6, 2014

Settling back in at home, but slowly

Home. It never looked so good... It never smelled so good... It never sounded so good...  It never everything so good. I am quite happy to be here, I just wish it showed more. I get to sit in my recliner, watch my TV, use my computer, talk on my cell phone, sleep in my bed next to my wife, be around my kids and my dogs... so why the hell am I still so down and deep into my own head? That is actually an easy question to answer. Yes, I am home and in the most familiar and comfortable surroundings I can be, but I am still not me. I am a shell of me. I feel like I've been gutted like a fish. To walk I have to use a walker. I can't stand for long without getting winded and dizzy and shaky. I have to take two different breathing treatments daily plus there is a rescue inhaler for emergencies. I'm taking a box full of pills every day. There is a cart with a little green oxygen tank that I have to pull around everyplace I go,  It's connected to me by a hose that is shoved up my nose (literally the line from the Mid-70's TV show "Welcome Back, Kotter" where they said, "Up your nose with a rubber hose"). There is a J-Tube sticking out of my stomach just to the left of the belly button that has to be flushed with water every day in case I have to get fed through it. I not supposed to sleep without a CPAP machine because of sleep apnea, and the headgear for it is so old it makes me feel like a rhinoceros. Not to mention it's quite literally held together with rubber bands and tape. I've lost about 100 pounds in the last four or five months.  That started about six or eight weeks before I was diagnosed in December. I don't feel like eating or drinking much of anything still. There is still the bed sore on my tailbone that has to have the dressing changed once or twice a day. I can't see or reach it to properly change it, so Lea Ann has to do it for me. Most of my clothes don't fit anymore... I am in squarely on the pity pot, and I'm stuck there with rubber cement. What happens when you sit on the pot too long? Hemorrhoids. I fully expect some of those to crop up in the near future, too. It would just be par for the course.

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!

10 comments:

CareAcross said...

Brian,

some people hate the word "journey", but it seems like you're taking it for what it is. Sometimes it reads like an adventure (how adventurous can taking a shower get..?)

You're lucky you have Lea Ann (and the nurse seemed quite helpful too!).

Looking forward to reading more about your previous stops in the journey...

Brian Brown said...

Thank you and I agree about Lea Ann and the nurse and everyone else that is along for this ride. Your choice of words is right on the money. It was, and still is, an adventure. Definitely not always fun and not always easy at times, but then what adventure is. Here's to a happy ending to this adventure... So far so good! Thank you for sharing it with me!

Tatianna Katsaris said...

I am continually amazed at your attitude and how you're handling all of this. I am reminded of my husband who had Lou Gehrig's Disease. As he progressed and lost his ability to walk, talk, eat, even blink, he always had the most positive attitude. I've found people who suffer so greatly,are the ones we can learn about grace and honor from. Thank you for sharing. I am loving this blog and always look forward to a new entry. - Tat

Brian Brown said...

Thank you, Tatianna! I appreciate the compliments and the comparison to your husband, God rest his soul. I bet he was a great guy. Just went up a bit early to scout out the best pace for later on. :)

Ste Brennan said...

Tell you what Brian I thought I had it bad with having a kidney removed!
Yes, piles will make their guest appearance - in fact I cannot remember now not having them, its like having a bizarre incontinent feeling that you just don't ant to itch if you get my drift.

I was given 2 to 3 years in 2010 so I am outlasting the forcast for now. I met Billy Joel last year too which was a massive boost.

Keep fighting mate
ste

Brian Brown said...

Thanks, Ste! I can understand your meaning! :) Congrats on the outliving the estimates! Keep beating those odds and make them all look at in in awe, wonder and amazement! :) Stay strong and leep positive, as I know you will!

Anonymous said...

Hi Brian. Sounds like you are doing an amazing job beating this cancer. My husband was diagnosed in Nov 2013 and we are in month 5 of chemo. No surgery, just chemo for now. There is significant shrinkage in the tumor, but they did have to put in a stent for a while so he could get nourishment. It helped alot. He had lost 40 lbs. Stent has since been removed as it fell into his stomach as tumor shrank. Thank you for sharing your experience. It gives me hope. I know if anyone can beat this he can. Hugs and kisses to you and please keep sharing.................Kat

Brian Brown said...

Hello Kat. I'm very glad to hear about your husband's tumor shrinkage! That is always a good thing! And enough shrinkage for the stent to fall into the stomach, it mush be shrinking a lot. Sounds like the treatments are working and hopefully he is tolerating them well. I also appreciate that you are enjoying the plog and the journey... As long as it rings true to some and maybe lets them know that they are not alone in their path, then I am getting the job done! :) Thank you!

Anonymous said...

Hi Brian! Enjoying hearing about your progress. And yes, you are making progress. So proud of you. We go back to chemo this Friday. Hubby gets chemo every other week. His fatigue level seems to be getting worse and he isn;t eating as well because the chemo has zapped his sense of taste. I know eting is based on enjoyment, but I am trying to convince him of the need for fuel and not just fun. He gained back 10 of the 40 lbs he lost. Dont want to see him lose it again. Thanks for listening. Hang in there........Kat

Brian Brown said...

Thank you, Kat! I am a year removed form all these activities and memories, but I totally understand and remember where you are coming from for yourself and your husband! I will hit on the chemo and radiation things for myself a little later on. :) Good to hear that your hubby is regaining a little weight too. I have finally leveled off in that regard too :)