Just heard from the doctor. This coming Monday at 10:30 I need to report at the Hospital. They will do a endobrochial procedure for this biopsy. This means that I will brought under a bit (no total anesthetic) and through my throat they will get down in between my lungs some how. By using xrays they will know here they are and find the tissue they need.
The doctor asked me to call the oncology ward desk to make an appointment with him on the 20th for the results. Why didn’t he make that appointment already when he called?
I am not happy about this. Or better; I don’t have a good feeling about this. When i had my initial biopsy, which they did with needle, it was already pretty tricky for them to get the tissue. And Theo was pretty big as you might remember. Now they are going in for 1 of 5 spots which lit up in the PET CT. How do I know that they can do that? The spots don’t show up on an xray. And they cant interpret a PET CT scan well (my onc doesn’t even know what SUV values are). So how good will the biopsy be and will they also be able to make a good diagnosis with the biopted tissue?
As for planing. Monday I have a major client appointment which sucks to move. But that’s ok. Yet Thursday is really tricky. At 11 Lori will leave for the States. And at 2 PM the VRMevent starts which I initiated. I already made sure that it can be done without me, but still.
Tomorrow I will get the letter from my onc to send to Dr. Einhorn so that is going but timing wise is to late.
I wonder if I am fighting ‘reality’ or if this whole thing is going the wrong direction and I should take control more. Maybe Dr. Einhorns knowledge can prevent a whole lot of unnecessary process.
UPDATE: Just called Dr Einhorn to see if he is in. He is out of town and will be back tomorrow. Tomorrow (Friday) I will call the OLVG to postpone my procedure planned this Monday till I have consulted Dr Einhorn. Tomorrow I will send him my email including my oncologists letter describing my case.
Hey there,
Don’t know exactly what to say but this sucks big time for you. And with that I mean mostly timing.
You should absolutely be the driver your journey, whatever detour or pauses you want to take. If you feel you need another opinion or wait ’till Dr Einhorns his given his findings, you should postpone.
Love,
JosK
Maarten, wish you good luck and hope dr Lawrence Einhorn can help you to make the right decisions!
I agree with JosK, just because they want to move forward, you really should have another opinion on this. Especially if they don’t know for sure what they are doing.
I think we give Doctors too much responsibility for knowing everything that needs to be done, in reality they are figuring it out too in some cases. Of course they know more than we do, and have more base knowledge of all this, but don’t have a false sense of security that they know what to do.
Take control as you have been. If it means postponing the biopsy for a week or 2, will it make that much of a difference? And, what are the risks of doing this biopsy now regardless, would it have to be done anyway to get more difinitive results? That is the question that needs to be asked.
We all want answers now, but if you don’t feel you have all the answers, make sure you do before you move forward. Several of my friends who have been through this (and you have them too) all say, know what is happening, don’t put all your faith that they know for sure what is best. Get more opinions.
Just my two cents…Connie
I agree with Connie, a few days will not make a difference if you find out a better solution. Always be informed!
We fully agree with the American side of the family.
Robbert and Emilie
You and Lori have done so well this far in making decisions and doing what felt right as much as you could, and now you know so much more!
Trust your gut!
As the others have said, if a few more days won’t make much difference either way, take the time to find out what’s best for you.
We’re with you all the way!
Katherine and Hans
xo xo
Maarten,
This sux. Keep the faith, follow your instincts and stay positive!
Thinking of you,
Yuri
Hi Maarten,
nobody ever knows anything for sure; you know where you are now, just do what makes you feel more comfortable, every choice has its pros and cons.
In the big picture getting well is the priority, with the exception of your loved ones, that the only thing that matters!
Love
Marta
You’re absolutely doing the right thing! Wait for that 2nd opinion…
Keep doing what you have been doing! Hang in there, dude!
M-
I come from some medical people and I think it is absolutely critical that you trust your gut and find a doctor that you trust to advise you in the way that best suits your needs. A second opinion is important to either broaden your scope, or support what you may have already heard. But most important is to understand that this is YOUR fight and the doctors are there to be trusted advisors. You have to listen to them, but always make the decision that is right for you. if something does not make sense, or you do not understand why something is being done, ask as many questions as you need to understand. you may not like the answers, but understanding why and how and the intended result is critical. Do not let the doctors pass you off, or intimidate you. be an active participant in the car eof yourself. You deserve nothing less and should expect much more.
fight. fight. fight. AS my grandmother used to say, “have you ever been down so low that you haven’t been able to get back up? of course not since you are here now. So why will this be any different?” You are maybe down lower, but i am certain that you will get back up.
Follow your instincts! If it feels like it is all happening too fast, then it is. You get to be the judge of that.
Tell Lori, safe travels!