When there’s a burning in your heart
An endless yearning in your heart
Build it bigger than the sun
Let it grow, let it grow
When there’s a burning in your heart
Don’t be alarmed
This fire grows higher
When there’s a doubt within your mind
Because you’re thinking all the time
Framing rights into wrongs
Move along, move along
When there’s a doubt within your mind…
Death Cab for Cutie, “You are a Tourist”
One of the most sustaining lessons that I’ve learned about living with metastatic cancer is that there very seldom are definitive answers. Most clouds come with silver linings. Most rays of sunshine come with darkened edges, lingering questions, and asterisks.
Getting the results of my CT scan proved to be one of those moments. I was hoping for a definite answer to the question, “Did I make the right decision in pushing for this surgery?” I think that the answer I got to this question was YES*. Notice the giant asterisk? There was a lot to be happy about in this report. And there were plenty of lingering questions and asterisks.
The rays of sunshine were bright. My lungs are still clear. My lymph nodes are still clear, my liver showed no signs of residual or recurrent metastatic disease. Let’s reflect on that for a moment. Five weeks ago, I had 17 masses- most of them very small. Today I have none. And that is amazing. I went 4 months off of systemic chemo, and my disease didn’t spread out to the most common culprits- my lungs and my lymph nodes- and that it amazing. My muscles and spinal column are clear. At least we think. More on that later.
The asterisks were both scary and muddled.
Firstly, I now have fairly sizeable cystic masses on both of my ovaries. The report offers up 3 differential possibilities for what they could be:
- cystic masses (non-cancerous)
- tubo-ovarian abscesses
Secondly, I have a very large collection of fluid beneath my liver on the right side and extending downward into the right pelvis. The report labels this fluid collection as “suspicious for post-surgical abscess.”
The day after receiving results, I traveled to Cleveland to meet with my HIPEC surgeon, who seemed to dismiss these findings for the most part. He didn’t believe that scans so soon after surgery were very valuable, especially after one so extensive since there was bound to be fluid build-up. He said that most likely in both cases that this was the case, but in the meantime to keep an eye out for other symptoms such as a fever that might signal an infection requiring immediate care.
These rays of hope, naturally, had to be followed up and tempered with rather blunt and insensitive comments. “Even if the ovarian cysts are metastases, from a surgical standpoint that really isn’t relevant. The peritoneal cancer inside of your bowel loops past isn’t ever going to go away. At best, chemo will only serve to keep it at bay for a while. Your situation is not a curable one.”
These statements were disturbing for a couple of reasons. For one, this is the first that I have heard from anyone that there is no possibility of chemo diminishing what’s left of the peri mets in and around my bowel loops. I know that it is difficult to treat peri mets with chemo. That is why I pushed so hard for HIPEC! Secondly, this dude just basically told me “Well, since the cancer progression in my peritoneum is inevitable anyway, it would be a waste of time to surgically treat ovarian metastases. Thanks for the shot of hopelessness, doc!
::Steps on Soapbox::
This is a perfect example of why I think that it is important to shop around for doctors:
- I haven’t liked this particular surgeon since the beginning, and strongly suspect he is the reason why my surgery was delayed, unnecessarily putting me at risk. The ONLY reason that he operated on me was because Cleveland was the only place offering me surgery, and they all came together as a package deal. My liver surgeon is one of the best in his field and proved it by ridding me of all of the metastases in my liver. I can’t say that I got similar results from this guy.
- I believe it’s important to surround yourself with doctors who don’t treat you like you are a lost cause or an inevitable conclusion. When you hear the words, “chemo for life,” “palliative only,” or “non-curable” head for the hills. The data may tell them that. And they may very likely be right in that assessment.
I am fully aware of how my situation will eventually end up. I don’t need my doctor to constantly remind me of that. There are always exceptions and just because something usually happens doesn’t mean that that thing is going to be true for me. But even more importantly- if my doctor is using language like that, I know that he or she is seeing me entirely in that context.
This means that they aren’t taking risks, and they aren’t fighting like hell to make me the exception to all of that data. It’s time to find someone who will.
::steps off of soapbox::
My recovery has been steadily improving also, with another asterisk. I can say that everything is markedly better than is was just a couple of weeks ago. I’m no longer nauseous. My appetite is back. My energy is finally starting to come back. But then there is the back pain. The only symptom that has gotten progressively worse. Enough that I have reverted back to Oxycodone several times a day to get through it. Perhaps it is related to the fluid collection in my abdomen? Perhaps it has been exacerbated by the spinal injury I sustained as a kid where I broke 3 vertebrae around that area? Perhaps it is something else?
And so I met with my oncologist this morning, and he is suggesting two more MRIs. One will be of my pelvis to take a closer look at the masses on my ovaries. Another will be a closer look at my spine, just as a precaution because of the back pain mentioned above. Let’s hope that these next scans provide clarity, and swipe the slate clean of all of the questions and asterisks. I will hope for the clarity, but plan for the asterisks.
One good piece of news is that my tumor markers are down to the high end of the “normal” range. They were nearly triple this number only 2 weeks prior to my surgery. This is a very good sign.
I’m trying to get to that place of a clean, fresh start. A place where I feel healthy overall and only have one area with cancer to focus on and target. A place where I can let hope burn and let the flames grow higher. But I know better. To live with stage 4 cancer means to always live with some degree of doubt. They spoke to me loud and clear during my “scanxiety” waiting period.
But for the next few days, and hopefully for the next couple of months as I start back to chemo, I will try to put them on a leash. I will try to keep the worries at a level that I can live with. I must make peace with the asterisks.
If I wait for the asterisks to clear before I can live, I might never stop waiting. I believe that this surgery has bought me additional time. How much is anyone’s guess, but I do know that I can’t afford to waste any of it. Whatever the scans say, I have done what I can. Because this is where the rest of my life exists. In every treatment that has a net positive result and helps me stay here longer, in every scan that brings me hope or fear, and in the gaps between the scans. Another stay of execution, and another chance at two fresh months of life. Both with, or without the asterisks.
2 thoughts on “Asterisks”
II can’t agree with you enough! I’ve thought this for myself with relation to my 30 years with a nerve disease (constant, endless pain- I came here from The Mighty) But, the comment on the surgeon? Really hit home as I remember going with my mom to her first appointment with a surgeon. She was dx with lung cancer from a routine check up prior to changing her insurance. She had no symptoms and 30 seconds in he said seeing her was “useless because …dead in 2 years.” I truly believe that doctors become surgeons and anesthesiologists because they lack the people skills to deal with patients who are conscious. I love your writing!
LikeLiked by 1 person
Thank you so much. Hearing about how that surgeon spoke to your Mom makes me so incredibly angry! If we made all surgeons, somehow, as part of their training all believe and live as if they had been diagnosed with a terminal disease for about a year, what drastic changes we would see!! Bedside manner would definitely change and there would be a hell of a lot more doctors willing to go an extra mile to give a patient more time, or to potentially even save their life. As someone who has less than one year right now, I cannot tell you how valuable a full year of life looks to me right now 😢