Judyg

Hi Michelle 
Had my labs today and the cpk number dropped from 430 to 138  woo hoo. Scan is this Monday and wow scanxiety is real. I'll update next week
Chuck

Hello Again, quick update from me and my neurosurgeon visit on Wednesday. He ordered additional images as he thought there was more to story than was being seen on taken images. He was correct. New CT showed the two MRI identified spots and 5 more. None were candidates for surgical removal due to either their locations, sizes or individual behavior problems, edema, hemmoraghing, etc. He felt whole brain radiation would be too risky to healthy parts, so proposed fractional gamma knife radiation to all 7 sites over 6 to 8 sessions. On Thursday he iradicated 3 small ones in one gamma knife session, and worked on the biggest hemmoraghing one. He said no more until next Wednesday to have rest up and watch the edema etc. But he and oncology agreed chemo is to start Monday (minus Keytruda for now - not sure why, oncologist will be going through that with me on Monday) before Chemo infusion because it was all a bit too much to take in yesterday after the gamma session and being so tired). Also getting tatted and marked up for radiation to the original mass from four weeks ago in the lung on Monday. That treatment will also run concurrent to chemo and gamma. Feeling very tired today but good in spirits. Best medicine so far... my son calling from England at 4am this morning to say he, his wife and my granddaughter are arriving here on Sunday while current travel/testing rules are stilll in effect between UK and USA until Monday. So, for me Christmas is coming early in my home this year through all of the wonderful medical people I am meeting, the efforts of everyone, and my family being here in about 48 hours from now.
 

Lizzy, I started chemo and radiation 2 years ago on Dec. 3. The mass in my lower left lung was also 6 cm. Today, 2 years later, I'm grateful to be NED. So I understand everything you're going through! 
It might help you to create a Caring Bridge site so you can give the people you invite updates whenever you want. This way you don't have to tell your story over and over, and it may give people permission to talk about non-cancer subjects when they see you. It takes a little time to set up (gathering email addresses) but afterwards it's simple to update and maintain. 
In time, I hope your condition becomes one that people can see past your cancer. Today only people who I don't see regularly ask how I'm doing, and that's more a function of politeness. They and I have moved on to my pre-diagnosis life. 
Best of luck with treatments and I'm looking forward to the results of your biomarker testing. 

Hello again Everyone, quick update. They weren't able to biopsy the right adrenal gland mass on Tuesday due to it being too close to the diaphram and wrapping around a nerve bank, but they were able to get to the mass in my upper abdomen so those samples have gone off to be tested. On Wednesday, they implanted my medi-port and the post xray confirmed it was well positioned, So that's all good news.
The xray did show that the lung mass has grown from 5.1cm to 6.2cm since the PET scan on Nov 9th which accounts for the ever increasing intensity of the pain behind my shoulder blade where the mass is pressing into my third rib. Am having a palliative blast of radiation of Tuesday to see if that can relieve some of the pressure and am seeing the palliative care Doctor on Wednesday as the Dilaudin doesn't seem to be helping much. Am excited for my appointment on the morning of Dec 2 with my oncologist who said by then my biomarkers shoud be back from the lung biopsy, and together with the results from this week's abdomen biopsy and today's scheduled brain MRI should give them a much clearer plan path. First Chemo date is still scheduled for the afternoon of Dec 2 as well but the exact cocktail won't finally be decided until after seeing the Oncologist that morning. So, medically I am really comforted by the professional care I am getting. Our hospital is part of the Walter Reed system, everyone is wonderful and the coordination and communication between everyone, and to me, amazes me.
Mentally I'm feeling like Dr. Jekyll and Mr. Hyde at the moment. In relation to the cancer itself my mind is in a good place whatever the next steps are, but am having little pity party moments over things non cancer related, mostly frustration with it being the center of attention when people outside of the medical community talk to me, as it seems to be their only topic of conversation. I am more than just cancer, and in my party for one moments I just wish they could forget about it once in a while, and instead of asking me about it all the time, remember I am still the person I was before the diagnosis last week. Still that lunatic who went back to school last year at 55 to with a fanciful idea of getting a History degree, and am now in my second year with essays to write with upcoming deadlines. The French and German Revolution doesn't care about cancer, and I like that. 😄 But I have to remember they too are processing and hurting. Does anyone have any links to what I as the patient can do to emotionally support my family and friends as they cope with all this?
Thanks so much!
Lizzy

Hi Lizzie,
We’ve all been there.  Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis.  Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed.  
 
There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker.   It’s not unusual for women under 60 to have one. 
 
It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease).  
 
In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. 
Michelle