The great waiting game....MRI of Brain - update

[mommasita]

Thanks for checking in. My appointment didn't happen because the doctor was in surgery later than expected so his office will call to reschedule some time today. Hopefully it won't be too far out from now, but you can imagine my frustration.

Most definitely.
It’s not easy, hopefully the patient needing the surgeon is all right . to hearing soon

 

[Rogue1677x]

I have an update! I had a virtual appointment last night at 9 pm (yes, you read that right) and the surgeon was awesome at explaining the findings from the scans.

He explained that there has been enough growth to warrant surgery but I could watch and wait if I wanted. There is quite a bit of bone around parts of the tumor and he said in very rare cases that indicates a different type of tumor, one that mimics a meningioma.

With that in mind, I'm opting to have surgery and do it at the end of April. There's no real urgency, but as he said, I can choose the time frame that works best for me. I'll get to take my daughter on her early graduation trip to Paris before the surgery and have those wonderful memories to get me through the recovery.

My coworkers have already looked at the policies of donating leave to me to prevent me from having to go without pay. My sisters both got the ok from their respective jobs that they can take time off as needed for appointments and such that I'll have.

And since there's more bone around the tumor than soft tissue, I'm renaming the tumor from Squishy to Spike. Gotta keep my sense of humor

 

[mommasita]

I have an update! I had a virtual appointment last night at 9 pm (yes, you read that right) and the surgeon was awesome at explaining the findings from the scans.

He explained that there has been enough growth to warrant surgery but I could watch and wait if I wanted. There is quite a bit of bone around parts of the tumor and he said in very rare cases that indicates a different type of tumor, one that mimics a meningioma.

With that in mind, I'm opting to have surgery and do it at the end of April. There's no real urgency, but as he said, I can choose the time frame that works best for me. I'll get to take my daughter on her early graduation trip to Paris before the surgery and have those wonderful memories to get me through the recovery.

My coworkers have already looked at the policies of donating leave to me to prevent me from having to go without pay. My sisters both got the ok from their respective jobs that they can take time off as needed for appointments and such that I'll have.

And since there's more bone around the tumor than soft tissue, I'm renaming the tumor from Squishy to Spike. Gotta keep my sense of humor

I’m glad you got that appt in. What wonderful coworkers you have. your sisters too, of course.
I think it’s wonderful that you’ll have that trip for your daughters graduation beforehand.
Spike, I love it

April/May is a great time to recover(if there is one) , you can heal, sit outside when you are able.

 

[WDWEPCOT]

Awesome your getting the trip in and got such nice coworkers and wonderful family !!! Love the name Spike!! It’s time for Spike to take a hike and go fly a kite !!! I hope you have a fabulous time in Paris !!!

 

[flyingdumbo127]

God Bless you Rogue. WDWEPCOTyour rhyme. Amen! Healing, love, and joy to all.

 

[Rogue1677x]

Latest update: I saw neuro oncology yesterday and we discussed my case, reviewed my images, etc.

Apparently there's some confusion about the radiologist reporting leptomeningeal enhancement dissemination because the oncologist and surgeon both are on the same page and agree that they don't see any signs of that. However, the oncologist is going to present my case to a board of radiologists (yay me, gonna be a case study) to see what they think. It would be a miracle to have a metastatic cancer untreated for 7 years and still be alive is the long and short of it.

I don't have an actual surgery date yet but being that a suture removal date of May 6th is in the patient portal, it means they are going to be doing it soon.

Either way, I'm going to enjoy Paris with my family next week and hit Disneyland Paris!

 

[mommasita]

Have a great trip @Rogue1677x

Wishing they hadn’t laid that on you before you left, but too late for that.

 

[SpaceMan5]

Latest update: I saw neuro oncology yesterday and we discussed my case, reviewed my images, etc.

Apparently there's some confusion about the radiologist reporting leptomeningeal enhancement dissemination because the oncologist and surgeon both are on the same page and agree that they don't see any signs of that. However, the oncologist is going to present my case to a board of radiologists (yay me, gonna be a case study) to see what they think. It would be a miracle to have a metastatic cancer untreated for 7 years and still be alive is the long and short of it.

I don't have an actual surgery date yet but being that a suture removal date of May 6th is in the patient portal, it means they are going to be doing it soon.

Either way, I'm going to enjoy Paris with my family next week and hit Disneyland Paris!

You seem to be in good spirits One positive thing is that you will have a lot of very smart ppl reviewing your case.

Enjoy your trip! Cheers

 

[Rogue1677x]

You seem to be in good spirits One positive thing is that you will have a lot of very smart ppl reviewing your case.

Enjoy your trip! Cheers

Thanks! It's a plus of being in Boston, there's no shortage of smart people here.

I figure if I get down or start worrying, it's not going to lead to anything good. There's only so much I can control and the rest is out of my hands.

 

[flyingdumbo127]

Have a safe and fantastic trip Rogue!

 

[Rogue1677x]

I'm back from a wonderful trip to Paris (cold, but had a great time). We got to go to Disneyland Paris, Mt. St. Michel, the Louvre, Versailles and walked around a lot taking in the other sites.

Surgery day is tomorrow and I'll be happy to get that part over and done with. I had a bunch of new scans done yesterday (the MRI was fun, it had "mood" lighting, a scene from a beach through some eye piece and music so it was a more tolerable experience).

I'd be lying if I said I weren't nervous, but I'm going to think positively. I have a phenomenal support group around me, my coworkers have already offered to take turns with cheesecake orders for me and I know my daughter is in good hands while I'm in the hospital.

 

[mommasita]

@Rogue1677x
I’m so glad to hear about your trip !
It sounds like it was perfect despite being chilly.
Quite natural to be nervous, but it’ll soon be in the past
Sending you great big hugs filled with love. Don’t rush anything, one step at a time.

 

[flyingdumbo127]

Much love and healing prayer, Rogue. Thinking of you

 

[Rogue1677x]

So happy to report that I'm home! The surgery went great, the only bit of trouble they ran into was that my tumor was more calcified and with the extra skull bone I have growing inward, he said it was like more drilling than initially thought needed. He got it all and that's what's important. Now I just have to wait on pathology for final report.

Before getting me into the OR, me and the surgeon were even having a lighthearted conversation over which Disney is better: disney world in FL or Disneyland in CA. I chose the World, to which he scoffed and says "no way, it's the Land for me....but I'm from LA so I'm biased, haha".

Where they had to shave.....well, if I were going for the reverse Mohawk look, just slightly off from the center, it's been achieved. Not all the way back, but definitely far enough. My hairstylist said she's going to find a style that I can rock. Right now it's Frankenstein.

Now it's all about healing and recovering. The medical team were amazing, they cleared me to go early because I was making such good progress. And now I'm home with my family around me, which is the source of great strength for me.

 

[where_else]

Wishing you all the BEST

 

[flyingdumbo127]

Praise extra be to God. dear Rogue.

 

[mommasita]

So happy to report that I'm home! The surgery went great, the only bit of trouble they ran into was that my tumor was more calcified and with the extra skull bone I have growing inward, he said it was like more drilling than initially thought needed. He got it all and that's what's important. Now I just have to wait on pathology for final report.

Before getting me into the OR, me and the surgeon were even having a lighthearted conversation over which Disney is better: disney world in FL or Disneyland in CA. I chose the World, to which he scoffed and says "no way, it's the Land for me....but I'm from LA so I'm biased, haha".

Where they had to shave.....well, if I were going for the reverse Mohawk look, just slightly off from the center, it's been achieved. Not all the way back, but definitely far enough. My hairstylist said she's going to find a style that I can rock. Right now it's Frankenstein.

Now it's all about healing and recovering. The medical team were amazing, they cleared me to go early because I was making such good progress. And now I'm home with my family around me, which is the source of great strength for me.

EXCELLENT news !!

So glad to hear from you. I hope you take your healing slow. I understand you with the hair, and praise be for dry shampoo
Wonderful to read about your family, and continued good thoughts and prayers for pathology. You’ve got this