Saturday 7/18

So, it has been several days since I’ve blogged and I was trying to wait until I had all the answers but I know that will take too long.

Last we left off I was having my PET/CT done. Well, I can confirm it’s in all the places that we saw on the Brain MRI: brain lesions, with extensive intracranial metastatic disease, right orbital (eye) wall, skull, left jaw, left thalamic lesion, base of skull, C spine lesions, right subQ shoulder. Think that’s it – as if not enough.

On Thursday 7/16, I had my PET/CT and according to my Oncologist, “It does show a lot of areas of disease.” Great. I have enlarged mediastinal and hilar lymph nodes (along the sternum), more like 30 brain lesions, bilateral lung nodules, several spots on my liver, multiple areas of bone mets including neck, left vocal cord, possible adrenal glands, left ribs, femur and sacrum along with uptake/activity in my pancreas. I can’t stop thinking about Mark’s face when I told him this news because he only thought it was in my brain and the other few spots. So, definitely not the news that we were expecting, but now we know.

Thankfully, Friday 7/17, Dr. Dirbas was able to see me and remove some of the right shoulder mass. He told me he wasn’t going for clean margins, he just wanted to get enough to re-check tumor markers so that we know what systemic (chemo) therapy to use. Plus the PET showed more involvement then the lump I felt on my right shoulder. I was left with a sore right shoulder that I am not supposed to use much, we’ll see how that goes!

I still can’t stop thinking: why did this happen to me, how did this happen, I’ve done everything that the doctors have asked of me – except obviously being very vocal and instead always saying, “no I am fine.” Not wanting to be that PIA patient that even complains/calls about a hang nail, no joke.

I sent a message to my Oncologist and told her that we need to have a serious meeting on Wednesday about my prognosis. I don’t want any sugar coating, just the truth and facts.

From what I know now, the plan will be to start with brain, jaw and other painful bony areas with radiation. Once we get the final pathology of my shoulder back then we can make a chemo decision. From my own oncology knowledge I will likely be on some form of chemo for the rest of my life, not daily or anthing. I’ve seen this happen to other patients before. They start with one type of chemo that is suggested and stay on it until if fails and they keep moving down the list and do radiation for pain as needed. The PET/CT is not a good test to tell the pancreas and other involvement so she may want to do more scans or just start chemo first. Who knows, they may say surgery of areas or even radiation ablation on cancer spots which will kill that specific area off. I am NOT giving up hope yet.

Today, Saturday 7/18, my friend Lynda came over and we took a walk and she went and got lunch. She is also a Nurse who recently repeated her Covid test to make sure she is healthy as can be for me! We still did social distancing to be safe. Mark golfed today so it was a nice distraction.

I am so excited that my Mom is coming out to visit on Monday 7/20. She has all the PPE, flying direct and first class. We will get her a car service and have put her up in the corporate housing across the street for at least 12 days. I’ve scheduled her for a Covid test on day 8 and she should get the results within 2-3 days. Fingers crossed she won’t get sick, and then be able to stay at our house. I’ll be seeing her at a distance. We can take walks and she can come over for meals, just have to eat outside again at a distance. There is NO way that I could have done this without her here. Can’t wait!!

Plan for this week 7/20:

• Monday 7/20
  • Dr. Horst (radiation oncologist) @ 9am
  • Dr. Li (neurologist) @ 10:40am
  • Dentist for cleaning at 1pm
  • Spine MRI from 2-4:30pm
  • Mom arrives @ 2pm

• Tuesday 7/21
  • PORT Placement, won’t know the time until the day before

• Wednesday 7/22
  • Dr. Man (oncologist) @ 4pm