Monday, March 3, 2014

ICU and Starting the Trail Back

Up until now I am sure some of you have noted that I have not mentioned the staging of my cancer. I did that for a reason. It was varying quite a bit and they had never really settled on a staging.  It had gone something like this... At first Stage 1 or 2 at the outside. After the CAT Scan, PET Scan and ultrasound it went to Stage 3. No one could could give us a really good, solid answer. My surgeon said, and I quote, "They will slice and dice what we took out of you, the esophagus and all 30 of the lymph nodes, and then we will know what stage you are for certain."  When those results came back it was determined to be S3N3... Stage 3 with three nodes involved, however we were told the cancer cells in the three nodes were "dying" and that is why they were just barely glowing in the scans.  All of the 27 other nodes were clear.  So, my final staging was S3N3.

The picture I am including here is not flattering at all as pictures go, but it shows how I looked and felt on the day after all all hell broke loose.  It was the first picture I had taken after surgery.

Brian in ICU, Tuesday, 1/29/13
Those of you that notice details will see that I am not in a hospital bed in this photo. I am in a recliner. To most that is a positive step in recovery, and it was for me too, but there was more to it than that in this case. The hospital bed did me SO very wrong. Sleeping in that bed was almost impossible because it was so uncomfortable.  It was causing cramps in the lower back which was a problem due to how close it was to the back incision site. The proximity was just too close. I actually asked to be moved to a recliner before they were going to get me sitting up. Sitting up in a recliner is part of recovery, but I did it more for comfort and the possibility of sleep more than for recovery at the time. Looking back now, I think I may have just been too big for the bed... Too heavy.  At the time of surgery I believe I was still around 300 pounds, give or take.

Another thing was found when I moved to the recliner... a developing a bed sore just above my tailbone. Those things are not fun. Stinging and itching and sore.  I cannot get comfortable no matter how I lay. With it being situated on the top of the butt, there is really no way to sit or lie on my back and not put pressure on it. The sore was something that made Lea Ann furious.  She had been a CNA and said that they are not really hard to avoid, so when I ended up with one she was very unhappy. They put ointment and a dressing on the sore as I was transferring to the recliner. Once in the chair I had to be careful how much I moved around. The ointment tended to make the tape around the dressing not stick well so it could make the dressing slide around or come off if I moved too much. However moving around wasn't a big issue at that time. I did not feel much like moving and I was still catheterized and not eating yet, so using the toilet was a non-issue. Being in the recliner was MUCH more comfortable. I stayed there a majority of the rest of the time I was in ICU. The nurses kept asking if I wanted to get back into the bed. I would not have cared if they took the bed outside my room and burned it in effigy just outside my window. I wasn't going back to it if I had any say in the matter.

I am still having issues taking good deep breaths, and I am still on oxygen as without it my saturation is not as high as they would like without it. The respiratory doctor is concerned because the lung that had to be deflated during surgery was still not inflating correctly.  Lots of what he called crackling when he we listening to my breathing. They were concerned about air flow, saturation and the very real possibility of pneumonia. The doctor decides to do a Bronchoscopy on me. That is a procedure where they put you out, then go down into your lungs with a scope and they can look around, get scrapings if needed and also wash out the breathing sacks in the lungs if they need to. He thinks that this may open the areas that are having a hard time re-inflating and allow them to work properly again. We agree to have it done, even though I get to be put back on the respirator for the procedure. Yay. I don't think that they had to move me. They were able to do that procedure right there in my room. Once again, out like a light. When I wake up I can't talk again because of the tube, but it is removed fairly soon after and I don't get quite as agitated as I had the first time.  I'm also not tied down that I remember, so that was a huge plus as well. After that procedure my breathing felt so much easier. I felt like I had a lot more energy and pep. Breathing is good.

On a personal note, our 6th wedding anniversary came while I was in ICU. February 4th. I had my Android tablet with me and I posted an anniversary wish on my wife's Facebook page, but that was all. That woman had stood by me throughout this entire thing and was staying with me in the room at the hospital and I did nothing but post on her Facebook? I gave her a kiss on the day I think (I hope I did). How crappy of a husband am I?  I should have asked the nurse or one of the boys or someone to go and get her flowers or something on that day. She deserved so so so much more than she got. I regret that I didn't do more. I am sorry, Lea Ann. If I could go back and do it differently I would, sick or not. My brain was still working, even if it was fuzzy at times. For now all I can do is apologize and say is I love you. You are the better half of me. Always have been, always will be if I have any say in the matter.

Please stay tuned for my next entry...  I'll get it posted in a few days.  These posts are a bit harder because the memories come in flashes and I have to try to piece them together as best I can. I tended to run a lot of them together.

Lastly, thank you for taking this journey with me.  I hope it is making some sense and might help you understand how things were working, at least in my mind.

11 comments:

Anonymous said...

Brian, you are a warrior for going thru what you have been!! You WILL get thru this!! you are right, you have a true gem for a wife, that doesn't happen very often. I know my dad only lasted 3 months after his diagnosis with EC (he was stage IV and spread to chest and throat) and so this past valentines day was the first in 47 years she didn't get a valentine from my dad, probably longer, they were married for 47 years, so dating I am sure he got her something. I sent her flowers and signed it from him. When you find the right person, it is a very special thing. I am sure she understands considering all you have been and are going thru. If you still feel bad, then you can send her something or do something for March 4. That is one month to the day, so you can make a joke that it may be the wrong month, but the right date.... and she would probably love that you did something for her, even if it is late. you can order online, but do NOT go thru pro flowers. I have had 3 bad experiences with them, and my mother as well.... fyi. AND I have to tell you that while my dad lost his battle feb 18 last year, my bday is the feb 22 and my son's bday is feb 3 ... so I am a February lover!!! Keep up the great attitude you have, and remember that your wife is with you because she loves you, and she understands about the anniversary! When you find someone special, that does not happen very often, so cherish it as I am sure you are. My parents were married 47 years. This past valentines I sent her a valentine and made it from my dad so she wouldn't have to have the first valentine days without him and no valentine from him. You can get her a card, flowers, or have a friend, neighbor, nurse, (are you still in the hospital?) do that as you said, and I bet she will be overjoyed that you did something, even if it is late. and as I said, she loves you, so I am sure she understands and has no bad feelings, so stop feeling bad. concentrate on killing this beast as you have been!!! I will be praying for you, I have been, but will continue to do so!!! You are a great guy, Brian, and your wife is a lucky woman to have you, just as you feel so lucky to have her!!! Sick or healthy, that is in the vows!!! .... MIchelle (I didn't know what to put for profile, so just put anonymous... not sure how to reply to the blogs.... urg!! LOL)

Anonymous said...

I just realized I repeated about the valentines.... sorry, should have reread it before I posted it!! Michelle

Brian said...

No problem on the repeat thoughts. I do that often in my posts. Just have gotten proficient at reading the posts and correcting myself before I post. :) I am not still in the hospital. The things I am writing about here were in 2013, so I am actually about a year out from surgery and doing well. Free and clear of the beast. :) And yes, Lea Ann and I are still together and as strong as ever! :)

Crissy Schoeneberg said...

Your blog brings me to tears. It brings the memories of my husbands battle flooding back as if it happened just yesterday. He is on five years out and doing great! We celebrated our 16th anniversary in the hospital too! It was three days after his surgery. Please don't feel guilty about the things you should have done for your wife, because you gave her the best gift in the world, YOU ARE ALIVE and fighting the hardest fight there is all so you could grow old together! The journey of cancer is a hard one but the lessons that you learn during that journey are immeasurable! Here's to many more years of good health!!!

Brian said...

Thank you, Crissy! I feel the same about the learning experience of this whole journey. And I hope the tears I bring up in you are tears of happiness. I'd hate to think these blogs are bringing up bad memories. That's not why I want to share my journey. I want others to see through my eyes and what we go through both on a patient level and a "watcher" level too. We are all much stronger than we think. I truly believe that.

Crissy Schoeneberg said...

Yes Brian they are tears of happiness, and more of pride! A person shows their true self when they are as vulnerable as you are when you are in a fight with cancer. Your story in a previous post about your tiny nurse and the joke you made with your wife using your fingers spoke volumes to me. No matter how bad he felt my husband always tried to keep a smile on my face. At our cancer center there was a bell on the wall in the radiation area that you got to ring after your last radiation treatment. He took the bell off the wall and ran through the entire office ringing it loud and proud. Brought the biggest smiles from everyone there that day along with tears of happiness! Always striving to brighten others day no matter how dark his day was. I can say without doubt the tears are of pride and thankfulness that I still have this wonderful man here on earth in my life today!

Brian said...

I like it! :) Humor and laughter and smiles are some of the best medicine! :)

Swathi Rao said...

Hi Brian,

Recently my father too were diagnosed with stomach cancer and he underwent surgery.he is also facing breathing problems as mentioned in your blog.Our family is going through very tough time.We are very worried.
your blog is giving some hope to us.

Brian Brown said...

Hello there! I am glad that my blog s giving you hope. I hope it continues to do so. For you and your father and your family too. As I have stated before, every journey through this is different, but there are common threads we can all understand. I wish you and your family, love, light, positive thoughts, continued recuperation, and smiles and laughter whenever needed or wanted. :)

Anonymous said...

Brian, this is like my story of EC only 12+ yrs ago, as well as mine was caught a bit sooner. As well as a few differences after surgery, I actually cried as I read through this because this far out some of those days are a blur, others it seems you will never forget, they rate this surgery worse then open heart, because of all the incisions and truma.I hope you continue to do well and if possible maybe talk with you by phone, sometimes maybe I can be of help to you and you to me, after all we are EC SURVIVORS..my name is barry fleenor..look me up on facebook...would enjoy talking to you..funny thing is my drs always ask if I know how lucky I am, YES EVERYDAY , MAY GOD BLESS YOU AND YOUR FAMILY...look me up...thanks and take care

Brian Brown said...

Hi Barry! Good to know that I have the distinct possibility of more than a decade post-op! I am coming up on 2 years for mine. I hope the tears were not bad ones for you. I did look you up on Facebook and sent s friend request. I am glad you are reading this too! It seems to be helping people, and that is exactly what I want this to do! :)