I had a different title for this post, however I changed it at the very last minute. I can’t do it. I feel badly that I closed the last post with me telling someone I hate them. However, what would have made it worse is if I had kept the 8 words that I wanted to use for the title of this post…yes, it involves a swear word. I just couldn’t put it up there. I mean, yes, I do swear. Sometimes it just seems to be the only way I can convey my feeling vs. more civilized words. Sometimes it is the only way I can get something across in an impactful, no doubt uncivilized way. Most of the time I use it to make my kids laugh. Admittedly it’s not something I am always proud of. However, it is who I am…for better or for worse.
But in this instance, it was not my words. It is a direct quote from someone else, a very wise someone else, who’s choice 8 words, changed our lives – possibly forever. And had I not ended my last post the way I did…this title would have been different.
May 17th I was told I would get a call from the doctor with the results of the MRI on steroids that would identify whether or not I really did have a second astrocytoma. True to their word they said I would receive the call between 2pm-7pm. At 6:55pm I was about to pick up the phone and call Will who was still at work to tell him I was panicked because they had not called. Surely that was not good news. They probably were on the phone with my surgeon giving him the heads up…trying to figure out how to present this finding to me etc… Again as someone who really likes and needs information it is because of times exactly like this, absent information or an answer (ideally), I can catastrophize (I know this isn’t really a word) absolutely anything.
I literally picked up my cell phone to call Will when THE call came in. The doctor, who was very nice and professional apologized that he was calling just before 7pm and knew I must clearly be anxious. He continued: “not to worry, what we saw was not a tumor, you are good to go! Have a nice evening.”
That was it. 15 seconds, maybe even only 10. I replay it in my head often.
Reread the transcript! ” Sorry to call so late, you are probably anxious. Not to worry, what we saw was not a tumor, so you are good to go! Have a nice evening!”. Maybe I am wrong, perhaps it was 8 seconds. That was it. click. phone dead.
I feel like I can do a Ted Talk on what NOT to do when you are calling a patient who has been anxiously awaiting results.
You would think “how could she be so offended -the guy barely said a word and it was over, as she says, in less than 15 seconds, maybe even 10?”.
That is precisely the point. For four days my husband and I have not slept, can not focus, are “faking it” with everyone – our friends, our kids, our family. Everyone asks how our SF visit was. Maybe it is our fault that we shared with others we were getting a second opinion. But we decided from the moment we found out we would be completely transparent ONCE something was confirmed. We were not going to make our friends and family any more stressed out than they need be.
So, when you call with THE news, and it’s the news you’ve been PRAYING for, perhaps, in acknowledging that it has been a bit of an anxious time waiting for results…just take, I don’t know, maybe one minute to talk to me. Not 8-10 seconds. Just a minute perhaps. It would have made the four days of waiting, the unnecessary (THANK GOD) stress, melt away.
Don’t get me wrong, I would take 15 second and hear the result was negative vs one minute and hearing the scan was positive for a second tumor. I’m not crazy.
It just felt so weird…like “hey at least I’m giving you good news, please don’t expect me to now talk to you or check in and see how you are feeling. You just hit the jackpot”.
Problem was, this was important. And they almost rocked my faith and confidence in my dream team in Seattle. I was there for a second opinion on treatment…not someone rereading my scan and telling me my doctors got it wrong.
I called Will and I am of course crying because I am so relieved. He picks up the phone and says “did the doctor call”. I hadn’t even said a word. I started crying and said yes. His voice was so soft and so measured “Beth, what did the doctor say? Are you okay?”
Will rarely calls me Beth. I don’t know if that means anything or not, but it struck me and all of a sudden I knew what he was thinking. So quickly I explained what happened and that my crying was because I was so relieved…he understood…waterworks happening at 511 Boren Avenue East as well (his office).
That was the evening of May 17th. On May 21 I had a follow-up appointment with my neurosurgeon. We had emailed him and let him know about UCSF and the second astrocytoma. When we arrived at his office he already knew (I had emailed him) that their findings were incorrect.
We asked him if he knew what they were looking at that it could be something large enough to be a tumor. Dr. Patel said he saw what they saw, but didn’t mention it to me because he didn’t think it was threatening, and instead of mentioning to me about these spots on my brain in other areas, he would say nothing, watch them over the coming months (I have an MRI every three months so he gets a lot of images for comparison sake)
Dr. Patel assured us that the diagnosis was comprehensive and that he agreed fully with the U of W oncology team that I should follow what they call the Standard Protocol for treating low-grade gliomas – in patients over 40.
So that is what we are going to do. The irony is that we were so worried we would have to make the choice. That it was going to be one of those “well, you could do ‘wait and watch’ with MRI’s every three months or you treat: Proton Radiation for six weeks five days a week on your brain, and 42 days of concurrent chemo. After that you will start your 12 cycles of adjuvant chemo.
Adjuvant chemo. Let’s just start there. I have no idea what this means. But it’s the least of our problems right now.
As we leave the hospital we run into our friend Mara. Mara is a force. She is a pathologist at U of W and one of their most popular and beloved faculty. Will was going with Mara and two friends, to Nepal in April. Until of course he had to cancel three days before they were all flying together over to Kathmandu.
She saw us walking through the corridor of the hospital. She was headed to the cafeteria to get a quick something to eat. So we walked with her and got her caught up on everything. We shared with her what happened at UCSF.
She looked at us and said, “I am so sick of people giving opinions when they are not the ones to be giving it. Surgeons cut, pathologists diagnose and radiologists find it and oncologists treat. EVERYONE NEEDS TO STAY IN THEIR FUCKING LANE!
Words to live by…
Why did we go and see a second neurosurgeon and his team? We should have just stuck with the oncologist. Remember, the one we decided to NOT see because we were so devastated by the news from the doctor before, whom by the way, does not plan “treatments”. Duh.
We talked about how when you go in for surgery and you come out safe, alive and with a successful resection, that the surgeon is GOD to the patient.
This was true for me.
The radiologist – who found it…is GOD to the patient.
This was true for me.
But the pathologist and oncologist are equally brilliant and play a huge role in all this drama. My surgeon even said, “you had the best pathologist team and the diagnosis is rock solid. No need to get a second opinion on that”.
Yet…did I consider them rockstars?
Embarrassingly, no.
I never saw one. I never got to talk to one. I never got to ask questions or form a relationship. YET, the pathology team was exceptional. They too were Gods in their field of expertise…they just never get to meet the patient. We never get to see first hand their brilliance, their confidence, and their amazing talent.
An oncologist depends on the pathology…it’s how they decide treatment. It proves just how successful or partially successful the surgery was. It confirms that the radiologist was spot on.
We were only looking for a second opinion on TREATMENT PLAN. To get one extra medical institution to concur with U of W that there is no other option…that due to my age etc., that I must treat and that the Standard of Care protocol is what I need to do. Or perhaps a major institution to very clearly convince us why treatment is not the right path to take.
I had already told everyone I would not be willing to do a clinical trial – of which there are many. At this point, we had been educated enough by our team of doctors that no one knows if it works – until the post-mortem. Well that sort of defeats the purpose. I can’t afford a post mortem for at least another 20 years…God willing, 30. I am also admittedly, not in a position where trying something new, anything, was a necessity. Sadly for many, it is. It is so upsetting I can can hardly think about it.
It was as if a light bulb went off in our heads. As soon as we said goodbye to Mara we got into our car to head home…or maybe to lunch…I cannot remember. All I know is we sort of looked at each other and thought, “why didn’t we think of that?”
Yes, indeed, everyone does in fact need to stay in their F’ing lane. And shame on us we didn’t realize or think of this first. We felt so great, so lucky to get a second opinion by one of the very top Neurosurgeons supposedly in the world (our Chief of Neuro describes him this way). I mean, wouldn’t that be the cats meow? And our Chief made the phone call for us and got us in. Talk about amazing treatment from our doctors!
By this time we had also received numerous emails and texts from our friends all over the country saying that they knew someone who was one of the best, who we should talk to, who had new treatments that were going to alter the way brain cancer is being treated etc.…and that we should go see them.
I was introduced to a friend of a friend who had also been diagnosed with an astrocytoma. She was 9 months ahead of me on treatment. She said the only place to be treated was the hospital she was at (and is doing a clinical trial). She was so lovely and like so many, offered to make an introduction and “get me in”.
I did not take her up on this generous offer. Two reasons. One, no two cases are the same…and despite the same clinical diagnosis lots of things about our situations were different…mostly having to do with the genetic mutations. The second and more important reason, I felt I already had the right team. Not only the right team, but the best team.
What I finally realized is that probably everyone in this situation, when they find themselves diagnosed with a possibly life changing disease, thinks they have the best.
I think I have the best as well. I know I do. But everyone else thinks they have the best and evangelizes about their treatment team. You have to believe that strongly in your team…it could be life or death.
I know I am right about my team. And I know everyone else I have been blessed to be introduced to, to commiserate with, to get opinions from, are right about their team. They too have the best.
One lesson for everyone…when you hear someone has been diagnosed…don’t swap war stories. Don’t say “I know someone else…”, or “I don’t know if you have read this article but…”, or give medical advice and tell them who the best doctors are. Trust me, you find out you have cancer, you will know a lot sooner than your friends who you want to go to. After all, it is your life, not theirs. I called everyone I trusted who was in the field, and got a list of GO TO doctors, biologists, scientists, genome specialists. You do that when you have cancer. Or at least I did. Advocating for oneself is vital. And again, living in Seattle you can hardly swing a cat without knowing someone who is someone or knows someone in this field. We are so very fortunate.
Finally, don’t compare your dogs cancer to a persons cancer. Ever.
One acquaintance, at best, stopped me when she saw me in the grocery store and explained to me that their dog too had just been diagnosed with cancer. She had just told their kids and of course they were devastated. So, she said, she knows as do her kids, how scary hearing the “C” word is, and what my kids must be going through…so if they want someone to talk to, lets get the kids together.
I mean, I do love my dog. But really?
Let’s just end on that note.
Why Not Me 