Saturday, May 31, 2014

New Worries as Post-Hospitalization Stuff Begins

After a few days of what will turn out to be the usual routine around our house, today is the day we have to go to follow-ups with the oncologist and the surgeon for outlining our next steps. I'm still not allowed to drive. All these pills would make me come up with a DUI if there was an issue or a ticket or, god forbid, a traffic accident. So I must continue to be a passenger. Still not quite used to it yet, but might as well get used to it. It will be a while before I'll be able to drive again. That sucks, but Lea Ann is an excellent driver and when she drives we are never late. Can't say that every time I drive. So, that's a plus.

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!


Tatianna Katsaris said...

BLAH.. I wanted to cry while reading this entry..Not at ALL what I was expecting to hear.. IT SUCKS SUCKS SUCKS that you have to endure more chemo and another surgery, minor as it is- your body is still healing from THE. I'm still amazed at how well you're doing though Brian.. that non talkative and blunt Dr is right.. you're truly doing so well.. I wish my cousin was doing better since THE. She's having a really really bad time of it with constant never ending nausea and vomiting. I told her rearranging your entire digestive system will do that! I've learned in this journey along with EC fighters that this battle is sooo difficult and filled with many many mountains to climb.. just when you think you're starting to make your way up one, another appears on the horizon.. it has to be sooo disheartening at times so I want you to know that I'm right here in heart and spirit beside you in this fight.. in prayer. Your blogs are soo utterly human and amazing. I know they make a difference for so many people.. You will get through this Brian.. I have every confidence that by the end of the summer, you will be gaining weight and on your way to a wonderful Christmas season.. One day at a time..

Brian Brown said...

Thank you Tatiana! Sorry this response took so long... I just saw it and wanted to respond. You're very right, EC is an incredibly large mountain to climb. Not no mountain is unclimbable.. It just takes time and extra effort. And even if we do not make it entirely to the peack and down the other side, at least those that didn't make it can say they gave it their all.