You don’t open your eyes for a while
You just breathe that moment down
Manchester Orchestra, “The Gold”
It all begins like clockwork. At 5 am you get your packet from desk J-1 then take it to the G-something desk for check in to the PAC-U.
Couple by couple, they start filing in. One having surgery, the other a spouse or some other family connection. Couple by couple they get the speech about the process, the lockers, and the pager. It will go off every two hours to give the significant other/spokesperson an update on how surgery has been going.
We all sit and wait for our name to be called. They usher me back, and transform me from a pedestrian to a patient. My clothes, folded nicely in a fabric bag. The bar code clasped around my wrist. The hospital gown. The perfunctory questions that I’ve answered many times before are rattled off again before they can begin sticking me with needles.
The first prick fails to draw blood, so they keep trying. The stinging pain left over is only a hint of the bruise to come.
Blood drawn, they go back to retrieve the spouse and allow them wait with you- but only for a while. At 7:05 am, just as promised, they come to roll you to the OR.
This isn’t my first time going into a surgery. But this is the first one since I’ve lost confidence that things will be okay. My first since losing faith in happy endings.
The corridor has a sharp turn. Abe walks with me, as far as he can go. When I see the door that he can’t go past I start crying. It just doesn’t stop.
Perhaps it was intuition. Intuition is something I never used to believe in, but I do now. It started on the day my first oncologist ordered my PET scan to check for spread to the liver. It continued to follow me through every appointment those first few months. A feeling in the pit of my stomach that something wasn’t going to go right today. A feeling that almost always has been correct.
I realize that I must go through those doors alone. I wipe my tears away, give my husband a kiss and a reassuring smile to tell him that I’m going to be okay, before my escort rolls me through the doors into the unknown, leaving him behind.
This is something that I will do again some day.
But this time, my first stop is outside of the OR. I answer more questions that I’ve already provided answers to. They see the tears in my eyes and tell me that they can give me something mild to calm my nerves and they do. I hear the music in the OR. The backstreet boys? Why is OR music always so terrible? They give me a warm blanket in case I am cold. The surgeon is running late. When he arrives he is complaining about something. But the happy juice has started to hit by now.
They ask me what surgery I was having that day, presumably to confirm my understanding of the procedures I would have. “Liver resection, possible colostomy reversal, and HIPEC if determined necessary.” The “huddle” around me, comprised of anaesthesiologists, a resident, nurses and my liver surgeon nod in unison.
They roll me in, transfer me to the OR bed, stick a few more things into me and then comes the oxygen mask. “Think positive thoughts”, the lady holding my mask tells me. “Positive thoughts lead to positive outcomes.” I don’t remember anything after that.
The next thing I remember is groggily opening my eyes whilst being rolled down the hall by two nurses. A clock is in plain sight, and I can see that it’s only been less than three hours since this began. This was supposed to be at least 8 hours. Panic sets in. I run my hands down my abdomen and feel the ostomy bag still there. And no scar.
Why was everything so quick? Didn’t they operate on me?
“No, they weren’t able to.”
Why not? I came up here to have a surgery and they did nothing?
“I’m afraid that we don’t have the answers to that question. They are going to get your husband and he will have some answers.”
My husband? What about my surgeon?
As I gain a little bit more clarity, the full weight of what all of this means starts to come down on me. Something happened that was bad. I came up here to get a liver resection and they did nothing!
By this point, I am wailing out the words. The chronology is distorted, but I believe that I started bawling something along the lines of Doctors Suck! This causes them to try to shuffle me away into the farthest corner they can find. I believe that the words I said after that may have been something similar to Yes! Please roll the dying, crying cancer patient away before she makes someone feel uncomfortable!
I make it back to a PAC-U bed and learn that my husband is coming.
Abe, I hope that you have some answers because they’ve told me nothing.
He sits down next to me. “It’s everywhere.” It’s everywhere? How can that be? I had a peritoneal MRI that ruled out extensive spread. “The surgeon took some pictures of the monitor and showed them to me. They look pretty scary.” So now what? Do I just go home to die?
The surgeon, who had run off to make himself busy doing rounds finally shows up. “The peritoneal disease was fairly extensive. I’ve never seen anyone tackle that much. The chemo was working for you, correct? It shrunk your liver tumors. I say that you go back to chemo. Maybe it will shrink some of the peritoneal area. I can also set up another appointment with the oncologist you previously met here at the clinic and maybe she can walk you through some options. You could also go to MD Anderson and MSK. If you like, I could email the oncologist at MSK and see if she knows about any trials.”
I don’t know when all of this spread occurred. Could all of this grown during the six weeks I’ve been off chemo waiting for this surgery?
“Yes, that is possible, but hard to say.” A pause. “I’m sorry.”
You know that sorry. It’s sober, short, and to the point. It’s the sorry that means “there isn’t anything else that we can do for you.”
Once the surgeon has left, the nurses can’t wait to get me out of there. Abe helps me to get clothes on since I am still wobbly. I noticed that they changed my ostomy bag and didn’t bother cleaning off the leak that apparently went down my legs. I feel like cattle.
Bruises and bandages to cover the incisions decorate both sides of my wrists and hands. I’ve got one spot in my abdomen where they presumably went in for the laparoscopy. And another huge bleeding, bandaged area from something stuck into and down my throat. They offer me water, but I can barely drink it or swallow. I am still hoarse.
We check out and leave to begin the numb 3+ hour drive down to Dayton. We wonder what we are going to tell the kids. After all, we were supposed to have been away for several days.
When we get home, we lay it out for them.
When they took a look inside, they found more cancer, so they decided not to do the surgery. “Is Mommy going to die?” My son. He is going to be the most impacted by all of this. I exchange a look with Abe. Breathe it down. At some point, I probably will. But it isn’t going to happen tomorrow because Mommy doesn’t feel sick yet. And you need to know that Mom and Dad aren’t giving up. We are still looking for alternatives that will keep Mom alive for as long as she can.
Have you ever seen three kids crying in fear of their mother dying? To say that this was difficult would be a HUGE understatement. Abe went upstairs and just lost it. He was long overdue.
And so the searching begins. Collecting names of recommended doctors who would be willing to do HIPEC and be aggressive with peritoneal disease. Collecting potential clinical trials that I might be eligible for. This searching gives me the illusion of control. Because when I stop? I will just be sad. And it will be hard to begin moving again.
Today we contacted the liver surgeon again. On his cell phone. On a Saturday. His willingness to do this went a long way toward why we chose him. We asked him whether anyone had determined my peritoneal cancer index score (something I learned about through resources in my online support group). He said that he didn’t know what that meant. “There was a lot there, did your husband see the pictures I sent him?”
Would the HIPEC guy that you had on call be able to answer that question? It was a loaded question. I wanted to make sure that the colon and HIPEC surgeon had at least entered the room before surgery was called off. After all, I didn’t see them yesterday, and nothing had been mentioned in the prior conversation about them weighing in. Based on the liver surgeon’s response, they apparently were there at some point, but there were no attempts to score the extent of the disease.
I asked about whether the HIPEC could have been done, even if the liver resection didn’t occur. The answer? “No, he would only want to treat the peritoneal disease if the liver disease was addressed first.”
And you would not do a liver resection if HIPEC was required? “No.”
Remember the huddle pre-surgery, where I laid out my understanding of what would occur (Liver resection, possible colostomy reversal, and HIPEC if determined necessary). Remember that they all nodded?
Then comes the plot twist from my liver surgeon. “Perhaps I can still schedule a separate surgery to ablate some of tumors closest to the surface and then ask whether the HIPEC guy would then be willing to do HIPEC in the same surgery.” Great plan. Why didn’t this get discussed, I don’t know- YESTERDAY? When I was there. When you were all there? This part of the conversation took place only in my brain.
He called me again later to say that yes, they could do all of this, but we would have to wait another month until everyone was available to do it.
Now for a bit of mathematics. I’ve been off chemo for six weeks. Another month would be 10 weeks. And then another 6-8 weeks to recover from HIPEC before chemo means that I will have been off of systemic chemo for more nearly 5 months by the time this is over.
A five month break in chemo for someone with very high prognostic factors for recurrence. And if the cancer spreads during this nice little break to, say my lungs or lymph nodes, what then?
There are so many things broken here.
- Broken promises. They never told me that liver resection would not occur if HIPEC was needed. They never told me that HIPEC would not occur unless the liver resection happened.
- Broken communication. How is it that the logistics of this were not discussed amongst the surgeons prior to my surgery? If HIPEC was never going to occur unless there was liver surgery, and liver resection was not going to occur if there was HIPEC, why did you have me consult with a HIPEC surgeon and put him on call to begin with? Why did you sell this to me as a combined operation?
- Broken trust. They promised a surgery and did nothing. They endangered my health by taking me off chemo for several weeks for a surgery that never happened. And why did the story change from Friday to Saturday? Friday the story was that it was too extensive for HIPEC. Today the story is because HIPEC was contingent upon liver surgery. And the colon surgeon? He specifically asked me whether I wanted him to go through with the ostomy reversal even if the liver surgery wasn’t entirely successful. I said yes. He wrote it down. What the hell got broken there?
- Broken empathy. Don’t leave me frightened and crying without answers as I am waking up and need them desperately. Don’t shove me in a corner for expressing sadness and pain and confusion. Don’t run off to do rounds and force my husband to break the news to me. Don’t shrug it off like it’s no big deal that you put the length of my life and overall prognosis in jeopardy because you failed to discuss if-then scenarios BEFORE surgery amongst the surgical team. Finally, learn to read body language. Don’t try to push us out as quickly as possible because we are ruining the mood and vibe. The nurse was trying to crack jokes as she was taking all of my wires and needles out. This may be just another day for you. For me? It’s the day that I get to tell my kids that I’m going to die. I’m so very sorry if I’m being a downer.
- Broken health “care.” I think that it goes like this:
- You buy a house because it has a great view. But as you look at that same view every day, it becomes commonplace. You start to not even notice it. I mean, it’s there every day. It’s getting pretty mundane and boring.
- You go into oncology (surgeon, oncologist, nurse, etc.) because you want to help people. But now you see people with cancer every day. The fact that they are dealing with big issues and dying is commonplace. You start to not even notice it. I mean, these people are there every day, cycling in and out. And some of them are such downers. It’s getting pretty mundane and boring.
What is another day at the office or hospital for you is life changing for me. It’s life-changing for my family. You sent me home without doing what you said you would. You sent me home with no hope and an “I’m sorry.” The moment you decided that you couldn’t or wouldn’t do anything you distanced yourself as protection. “I’m sorry” is a shield.
Yesterday, I groggily opened my eyes. I breathed it in. Something bad had happened. I’m still breathing it in. Because I can’t call anyone, or set up another path to a way to solve this until Monday.
I cycled through anger this morning, but right now I just feel numb. My appetite has left. My limbs feel heavy. I keep catching myself staring straight ahead but looking at and focusing on nothing.
I guess that something else got broken a bit on Friday. That something was me.
- My trust in the surgical team I chose (the subject of my post from only one short week ago).
- My trust in my own decision making. I think I went with the wrong surgeon. He won me over because of the Clinic’s infrastructure and reputation, his straight-forward manner, and by giving me his cell phone number to set things up if we decided to do surgery with him. I didn’t see this coming.
- All of the hope and spirit that was hanging on getting a liver resection that would improve my prognosis and give me time? Shattered.
- Now I just have more questions.
- If I try to wait to get HIPEC to address my peritoneal disease, will I be off chemo for too long? Will it spread somewhere else?
- If I simply go back to systemic chemo, will the peritoneal disease continue to spread or grow larger, undetectable by any scan except for another laparoscopy?
- Will I choose wrongly again? Like I did with my surgical team?
Let’s hope that next week I will be able to forge together another plan. Because I am desperately in need to some glue that can help me try to reassemble all of these broken pieces.