Please read the ‘Wednesday at the Oncologist’ blog before you read this one so that you are up to speed.
I am writing the bulk of this on Friday and Saturday, in a groggy state of mind, but I did do some editing.
Thursday Morning
I had Ryan pick me up at the house at 9:30 so I could be at Seton central by 10. Of course, I had to fast the night before with no fluids after 7 a.m. and I was already parched. Maybe it was from the mexican food the night before.
We got there on time, but the front entrances were blocked by big construction trucks for paving. I guess 10 a.m. is better than 10 p.m. for that sort of thing. He dropped me off at the back and I told him I would call him when I was ready to be picked up.
I walked through Seton to the front where Day Surgery is located. They were quite busy and I painfully waited in line for about an hour. I was told that they could not accept the diagnosis as written and they had to contact the Doctor’s office. I guess someone had written or relayed an incomplete diagnosis. So I waited another 20 minutes till that was straightened out. At least I got to sit as I was having a lot of trouble standing for so long.
They called my name and took me back to a pre-op room and told me to change. I waited about 45 minutes before any one even acknowledged I was there. I waited about another 25 minutes before I saw the next person.
I needed to do some Qi - Gong centering in my head, along with entrainment breathing to get settled and balanced. I felt pretty wound up. I don’t think that it was just that I was being neglected.
They took my vitals, did all the paperwork, took my possessions and started the IV. I had to count my cash and sign for my valuables. Those would go into a safe as opposed to the clothes locker.
I found out that recovery would only take an hour instead of 2-3 hours so I would still be able to do chemo before the oncologists office closed. I think that helped lower much of the stress I was feeling. I was thinking that my stress threshold must be getting lower since I was feeling more anxious than normal. Maybe it was the realization that I was about to start chemotherapy after all this time and this was the start of what Glenda and I had been mentally and emotionally preparing ourselves for.
I was rolled back to OR and the incision site was prepped. I was sliding off into La La land, so I guess the anesthesiologist was doing her thing.
I woke to them pressing gauze and band aids into both sides of my clavicle. My initial thought was, hmmm.... that’s odd, but I was still a little groggy.
The surgeon leaned over just before they wheeled me to recovery and said that he could not place the P-o-C at the original site because of weight loss and proximity of the vessels to the clavicle. So they had to place it over on the right side. He said that the right side worked out good and was ready to go. He said that during the procedure, the left subclavian artery had been was nicked and there might be a hematoma over the site because of some of the blood loss.
They rolled me back to recovery. Overall, that wasn’t so bad, other than the mishap. It seemed quick and painless. The first thing I did was ask for something to drink. It is amazing how good, even tap water can taste, when you are so thirsty. I usually ask for half juice with water. Every time I saw the nurse I asked her for another drink. I was so dehydrated.
I had a few new aches and pains in recovery. I noticed some left sided lower chest pain and some lower mid back pain. Not unusual I guess when laying on OR tables. I felt pretty good in recovery. I wasn’t nauseous, my vital signs were all good, I could take a good breath and I was able to drink fluids.
The nurse said that an x-ray was ordered and they could not release me until the x-ray was taken and read but it shouldn't take more than an hour.
Somehow, during this time, the bathroom toilet between the adjoining rooms became stuck. The nurse said that maintenance was called but he had two other stops before this. Talk about loud and obnoxious. Even with the door closed, it sounded like a 747 ready to take off. I hate to think what all they can flush down those things.
So now I am playing the waiting game with Radiology. I am listening to the water wailing next door and starting to worry about making chemo on time again. I can feel my chest tightening. I started my calming exercises again.
In about half an hour, mobile radiology came down to shoot the x-ray. Good, still have an hour to spare.
The post op nurse apologized about the noise while she gave me something more to drink. She took out the IV and I was able to change into my street clothes. She said she would call Ryan to pick me up, and as soon as Radiology cleared me, I could go.
As I was changing clothes, I noted that I had more chest and rib pain as well as trouble standing straight, almost to the point of being doubled over. Since I hadn’t been standing for a while, I thought I was really stiff and sore. I finished dressing and sat back down. The back pain had now moved around more to the side and front of chest. It was getting harder to breathe.
The surgeon walked around the corner.
“Where’s your better half”
“She had depositions today that were scheduled months ago. My son is going to pick me up and take me to chemo.”
“OK - Well, the chest x-ray showed a lot of fluid build up in the chest cavity. I think we need ... what is all that noise?” He turned around to look at the bathroom door.
“The toilet is stuck” I stated. “ I have been dealing with it for an hour now.”
“Jeez, I don’t know how.” He said shaking his head. “Thirty seconds is about all I can handle.”
I had a hunch what was coming. My chest pain was getting worse.
He continued. “We need to get a chest CT to see how bad the fluid accumulation is and try and see if the vessel is still losing blood.”
I looked at the clock, twenty minutes to chemo. Frustration time again. “Chemo isn’t happening today is it?”
“I’m so sorry Brian but I can’t let you leave to go home or go to chemo before this is all checked out. This hospital is exactly where you want to be, and not at home, if there is still some blood leakage.”
I knew he was right. “OK” I said. Tears of frustration started welling in my eyes.
“ I know, this has been a tough few days” he stated
“Tough few months.” I lamented
He stood up ‘Let me get this scheduled STAT and I will be back to talk with you.”
Don’t drink anything!
Luckily, I got some fluids in. But I was still so dehydrated. I had not eaten in about 21 hours at this time.
Thoughts were flying through my head. The realization of what happened burned through the anesthesia.
They punctured my subclavian artery! Oh my God! I don’t believe they friggin punctured the subclavian artery.
Well luckily, my current condition did not feel unmanageable so I am thinking, lets get this over with so I can get the hell out of here.
As I sat there, listening to that damn water, I thought about all the time and energy Glenda and I had put into getting chemotherapy started as quickly as we could. All the frustration with the time lost in testing and diagnostics at MDA. I thought about how all of our mental/emotional energy has been directed to this moment and now there was another setback.
I am usually a pretty tough guy emotionally, but I started to cry. I also started thinking about the potential seriousness of a slow bleeder and how my father had pretty much died from complications of a similar thing.
What if.....
I got more emotional and began to sob. I just couldn’t help it. It would have been so easy to really let the dam burst, and I probably should have. Sitting alone in the room, I guess I started feeling sorry for myself. I reined myself in and sought out support. Glenda was in Depositions, so I tried her sister, Sandi. I was choking back sobs and couldn’t talk.
Like usual, she answered cheerfully “Hi Darling” How are you?”
“...............Sandi..............I...........uh.............need ..................huhuhuhu...........................”
“I’ll be right there”
I know there was a little more said, but that was about it. The nurses looking in on me were very compassionate once they saw I was crying but obviously did not know why.
Some how I sucked it up and called my son and told him he didn’t need to pick me up, that I had to stay a bit longer. Shortly there after, Glenda called to say that she was done, heard the tone in my voice as I tried to get her up to speed and said she would be there as quick as possible.
A nurse came down to draw blood. I said I had blood drawn earlier but she said they needed a creatinine level prior to the CT. She did not get the stick on the first try.
The surgeon reappeared and said everything was set to go and that they would get me in a bit. He said he would be with me during my CT.
The pain was starting to get worse now. It felt like a heart attack must feel like. I was having trouble breathing like some one was giving a bear hug.
“My chest hurts and is really squeezing me.” I told him.
The Surgeon said “Yeah, that’s what it feels like. It can be very painful.” “We have all kinds of pain medication. Do you want something for your pain?”
“No, I want to be able to eat afterwards” I had decided to tough it out for a while longer. (big mistake)
“OK, then, just let me know.” “I’ll be back when they come for you.”
He left and Glenda arrived shortly there after. She walked over to hold my hand. We tried to talk over the water noise.
I finally had enough of the water and asked the nurse to move us. We moved next door and could barely hear the water now. I told Glenda that I did not think this was good and that I had a suspicion I might need to have my chest area drained.
The guy doing the CT showed up with a wheelchair. I climbed in, kissed Glenda bye, and we headed off. The Surgeon rounded the corner and said he wanted to talk to Glenda and that he would meet me in CT.
I couldn’t sit straight during the wheelchair ride. Every little bump on the way sent pain through my chest causing me to contract into myself even more, if that was possible. I could barey breathe. I was in my warm street clothes but could not stop from shivering in the cold hallways between all the big diagnostic equipment.
We got into the room, and they wanted me to change into a gown. At this point I had trouble standing and sitting from the pain. I could barely raise my arms from the two incisions on my clavicle. I couldn’t straighten from the shivering and muscle contractions. Somehow, I got into a gown and laid out on the tray.
Of course it was a contrast CT, so he hooked me up to the auto injector. (Here we go again) I had to try keep my arms above my head for the imaging. They rolled the tray into the doughnut hole and asked me to take a deep breath and hold a few times. That was laughable since I was hyperventilating. I could barely breathe in but I could kind of hold my breath for like a second or two. A few passes and it was over. I barely even felt the rectal flush until I sat me up.
The surgeon came out and said “The images show there is a substantial amount of fluid accumulation and blood that has perfused into the chest cavity. It is creating tremendous pressure that we need to get off your lungs and heart.”
I frowned and shook my head.
"There is too much accumulation for your body to absorb and deal with on it’s own. He continued. If we leave that blood in there, it will congeal and form a big scar tissue mass around everything. We are going to need to drain the area.”
I knew this was coming. I have been in medicine long enough to know how things happen and progress. Yet, I was still so overwhelmed by the negative turn of events in such a short period, I had another little sob spell.
“Yeah, I figured as much” I nodded.
He continued. “There just so happens to be an outstanding Cardio-Vascular surgeon who has done hundreds of drainage tubes. He is currently performing surgery at this hospital and I have asked him to do the tube for you and he said he would.”
Well, that sounded good! "Sounds good to me."
“They will take you to surgery recovery to do this. I will go tell Glenda what is happening and meet you up there.”
I nodded OK and he was off.
The CT guy rolled my wheel chair up to recovery. It was a big rectangular room with a dozen or so partitioned areas containing beds and patients. Most of the partitions were open to the inside of the room but several were open between the patients. I was in excrutiating pain at this point and most have looked quite odd. I had a hospital gown on over my street pants and shoes. I guess I was white as a sheet.
I don’t know how or why I even noticed, maybe because I was under medicated and alert, but I got this eerie, deja vu, kind of feeling as I entered this large room. So many of them were watching me, following me with their eyes, as I was wheeled in. I of course, was checking them out as well. It was almost like a modified dark corridor dream with people I did not know.
The CT guy rolled me around the room, as if on parade, looking for a place to park me. He found an open space with out a bed and one of the recovery nurses came over looking confused. I don’t think they were expecting me.
The CT guy told her that the C-V surgeon wanted me up here. About that time, the C-V surgeon walked up and introduced himself and told the nurse that he needed a bed.
He quickly explained the procedure to me as I sat in the wheelchair. He said that he has done a thousand of them and promised it would be quick and painless. I asked a few questions about the procedure so that I was fully informed. I was in so much pain and discomfort that I probably did not make a lot of sense. I think I asked the same thing more than once.
“You don’t have to be a cowboy on the pain.” The C-V surgeon said. “We can give you what ever you need.”
“No.” I said. “I want to eat afterwards”. (what a dumb ass I can be) They must have thought my focus on eating was strange at a time like this. I really didn’t comprehend how serious this all was. I just knew that I wanted to eat afterward and by God, I was going to eat!
I kept asking them for an IV since I was so dehydrated. My surgeon told one of the nurses to start an IV, one saline and a Ringers after that.
All of a sudden, a half dozen nurses in scrubs rolled in with carts with trays and a bed. They quickly got me on the table and undressed. (Me, not them) They started prepping the incision site and discussing what percentage of Marcaine they were going to use. They surrounded the table and worked very efficiently. I presume they must have been his OR staff.
The curtain to my right was closed but the curtain to my left was open and the lady sitting up in her bed, had a bird’s eye view.
The CV surgeon started off gently enough while numbing the area, but each needle insertion was progressively harder and deeper. If he felt me flinch he would work the area some more. I was shaking the whole time he worked on me.
He kept jabbing and jabbing and jabbing me. I could feel him push into the area and then squeeze down to inject the Marcaine. I don’t know how many syringes he went through. There were dozens of sticks.
“You have enough Marcaine in you to keep you numb for 12 hours.” He commented
I knew he was making the incision even though I didn’t look. I could feel pressure as he would cut, wipe, cut, dab explore, cut. I did feel the tube being inserted and the sutures tightening it in place. They then hooked the tube up to suction. A lot of fluid came out. I guess about 700 cc’s to start.
He said I should start to feel some relief. I wasn’t really feeling any different. My whole chest felt like it was in a vise and I could barely breathe. But, I didn’t say a thing since I had refused the pain meds. ( Can we say dumbass, again?)
They still hadn’t hung an IV. My lips and mouth felt like hot sand paper. Two of the recovery room nurses were debating back and forth during the procedure who was going to do the IV and what vein would be best for what gauge needle and so on. I again asked for an IV.
I finally asked for some pain meds and they said I would soon be gettig the same thing I had in the original surgery when they do the Arteriogram.
“Arteriogram? What arteriogram?” I asked.
Oh God, not another procedure I thought. I felt like I was on a roller coaster of nightmares that would not end.
It was explained to me that an arteriogram still needed to be performed. That it was important to make sure that the nicked blood vessel was not still leaking.
“I thought that the CT showed it wasn’t leaking” I asked
My surgeon explained the the arteriogram was a better test. They would thread a catheter up through my groin into the area of the damaged blood vessel by my clavicle, spray some dark dye, and then see if it is still leaking.
I asked about risks and if there was a chance of re-injury to the area and he said no to re-injury. He said the usual risks outlined on the consent form. That caused a stir.
"Oh yeah, we better get some consent forms signed." I heard someone say.
He said he found a doctor who could do the procedure right away.
“If we have to, then we have to.” I sighed. I must have said this with a tremendous amount of resignation, because he kind of stopped and looked at me compassionately. At this point I was a whooped puppy and I was wondering if this nightmare would ever end.
“ I know that this has been a long day and has not turned out as planned. We are almost done.”
“ I need to go talk to Glenda and get this set up. They will draw some blood for the test and be down to get you shortly.” He took off once more.
More blood? Oh come on!
By this time, I already had several consent forms lined up to be signed by a vigilant nurse I spied in the background.
The two recovery room nurses finally decided who would get the blood and from where. Most of the C-V surgeons staff was gone by now. The nurses missed on their first stick. I think I see how easily torture can break ones will.
I signed several consent forms and luckily this nurse from the arteriogram place took over. He hooked up the IV, discussed with me everything that was going to happen, covered me in warm blankets, loaded up my tube suction device and wheeled me out of there. Wow, he seemed like a guardian angel.
Once I got into the room, several people slid me over onto the table under the imaging devices. The covers had come off and I was shivering once again. I couldn't really feel the chest tube and hose sticking out of my side but I could hear it running. They located some more warm blankets and covered me up. Wow, did that feel good.
The doctor performing the procedure told me this was a search and repair procedure. If he found a leak he would repair it with a stent although it would be a temporary fix and would most likely have to be repaired surgically in the future. They had me initial the consent form after they added the stent part. My vitals were still stable from what I could gather, and I figured that the artery had stopped leaking, but could not be sure.
"OK, let's do it" I said.
I told them I had to pee really bad and they got me a plastic urinal. I had to roll to the side a bit and actually didn't make a mess of things. Ahh, warm blankets and a pee. Much better.
They uncovered me and prepped both of my groins. They shaved me and washed me with a cold wet dye. I don't remember anything after that but I recall waking to the doctor showing me the pictures on the screen and the blood vessels with dye in them. He said everything looked fine and they would take me to my room now.
It was a little after 7 p.m.
In my next blog, I will tell you about that night and the next few days.
I hope this is not too much detail. So much happened that I tried to capture.
Love,
Brian
7 comments:
Oh Brian, what a nightmare!
Mom just gave me one of the old bible books that Gramdma Strong had kept by her bedside. One of her favorite verses, underlined in red as a "promise" to her, would benefit you as well: "Fear thou not, for I am with thee: be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee..."
You've definitely had your share of bad luck already. I'm sure that better days are ahead. With Love, brother Rick and family.
My dear friend Brian,
I must say I too teared up a bit reading what you went through. you are a stronger man than myself. Much better patient than myself as well. I would have taken names, kicked ass and threatened to right letters to their accreditation board, etc.... which would have gotten me much worse care and probably no warm blankets at all.
First of all my friend, contrary to your belief, when offered pain medication, take it. Always. Tell them it is not enough and get more. Lesson hard learned for you. If you take enough you can eat just fine. LOL
Second thing, I agree with your bro, better days are to come for sure. Might as well get the negative shit out of the way on day one. I know this is not what you want to hear, but all things happen for a reason, so count your blessings that it happened and try to accentuate the positive. That being said, they will never forget you and will treat you with the kindness and respect from now on, due to you good nature.
Did I say take the pain medication?
When I recently had day surgery and was freezing to death, I looked for a sweet elderly nurse and beg her for a warm blanket for comfort, then flirt, as best you can with the male nurse for a warm blanket, a smile will do just fine and you will have it. They all know what you have been through.
If you ever have to go to Seton again, you might mention that you know Pat Hayes. She is the former President of Saint Edward's University and currently running Seton. You may not know her, but I do , and that is close enough. Just ask if you could speak to your friend Pat Hayes, they will get the picture. Trust me they will not call her but they will ensure you are well taken care of.
Did I tell you to take all the pain medication you can get your hands on. I know , I know you you do not like pain medication, but you were in pain my friend. As I am sure you know you have "patient rights" you have the right to be taken care of and treated right. THE RIGHT TO BE COMFORTABLE, AND KNOW WHAT IS GOING TO HAPPEN AT ALL TIMES. It is a JCAHO regulation, often hidden in the tinny type. They don't really discuss it with you, but believe me you sign the paperwork on it. A JCAHO complaint is not a good thing. Joint Commission for the Accreditation of Health Care Organizations.
Just keep that in mind if it happens again, I think you did the best thing you could have done. Honey attracts more bees , blah blah blah. Just file it in the back of you mind for future use. Glenda has the right to look in your chart to ensure everything is documented. That is important if you choose this avenue.
Enough of that, I feel in my soul it will be much better from here on out. I have faith in Glenda to ensure you are well taken care of I also have faith in you to ensure to make everything positive in this journey. There is a time to get big, and a time not to. You know the difference. Just do not become a doormat, your the most important person there, period. Hospital healthcare is not what it used to be, as you know. I have no doubt that after a few days, you will see the positive in your experience. Think of it as an endurance test and you won!
Congratulations, I am proud of you. Very proud. Not many can do this with no pain medications, I think we have covered that, right ;-)
I am glad your home my friend and look forward to hearing the rest of the story. Right now your in a safe place, well loved, and have all the tender loving care you deserve, that makes me feel good, as I am sure it does you as well.
Again you learned a lesson, so make it positive, enjoy your holiday my brother. I am thinking of yall and know from this day forward, it will not be so hard and will be much more positive. I will be in touch with a reading soon.
Namaste, I bow to your strength.
Bryan
anything, anytime, I am just a couple doors down.
I love Rick's Bible passage! I also love this quote by Jane Addams, "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."
You are Superman!
Love, Sandi
Brian,
Really a horrible day---our hearts go out to you!
Your strong will and positive attitude will get you through this challenge.
Love, Wiley and Sandra
Brian,
The light that comes through your words and into my heart is uplifting. I feel inspired and awed by your courage and humor. Thank you for being so personal. I am very grateful. I am totally rooting for you. Love, hugs and peace,
Joaquin
Holy Sh*t!! I hope I never complain about having a 'bad day' again! OK, now let's get the chemo started and get you healthy!
Sending love and hanging on your every blogged word, - Phil
Dear Brian,
I don't think that we've ever met, but we are definitely connected. We share brothers. I am guessing that your brother Rick, my brother-in-law, has told you about the time that he helped my Dad, Richard, through his bout with Renal Cancer, so I have some idea of what you're up against. Rick was a pillar of comfort and support through that very uncertain time in our family. When I saw his request for prayers for you from the family at large, I was immediately compelled to send whatever good will I possibly could your way. I'm not exactly a prayerful man, so I'm not sure if I have anything to offer in that department, but I'll do anything I can in honor of the honor that Rick gave to my Dad. My prayer will be to my Dad (the only personal connection I have right now to the other side), that he will help you find the best medical and spiritual support you can to run the long race and bring home a winner.
I might add that your approach to the fight is very creative, keeping the fires of the mind and soul alive inside of you. I know this kind of discipline doesn't come easy at a time when your body must be reeling. I may not be very prayerful, but I am a strongly rooted in the belief that the mind and spirit can drive one forward in accomplishing seemingly impossible accomplishments. Or, as taken from the "book" of Polar Express, to "Believe".
With love and admiration,
Wishing you the happiest new year to come,
Brother Tony
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