Happy New Year. Something about this feels too familiar...New year, same me
Two years ago, on this day...I got that Friday evening call you don't want from your doctor stating that it looked like I had some type of lymphoma (see timeline and post here). Ironically, today, I consulted with a radiation oncologist to determine if radiation was a viable treatment option for this relapse.
The good news is, yes, if the cancer is only in the lymph nodes in my neck, then for about 4 weeks (5 days a week), radiation therapy would be the plan. The unknown, is whether the cancer has spread. I have been getting CT scans for the last year, as they pick up enlarged lymph nodes, however they do not pick up cancer like the PetScan can. So, next step is getting a Petscan (and lots of positive thoughts and prayers that cancer has not spread). If lymphoma has spread to other parts of the body, radiation is not going to work.
So, we schedule the Petscan, and also schedule the simulation scan (something they do to get you prepared for radiation therapy) and we wait.
I mentioned in my last post, a follow up with my incredible UCLA doctor. He is part of my "team" or he was until on December 24th when my insurance denied the request for the authorization to see him. They claim that UCLA is now "not in network" but I can go to Cedar Sinai. WTF! Seriously? (I mean, I am not saying Cedar Sinai is not a reputable place), but I have an established relationship with Dr. DeVos, and am already a patient of his. So now, I have to start all over with a new doctor? Ugh. After a few calls, I was told I could appeal the decision. So I am now waiting on that...could take up to 30 days. 🤷♀️ in the meantime, I am scheduling an appointment with Cedar Sinai, just in case and a second, "second opinion" couldn't hurt. I swear, it is like a full time job navigating all of this...and exhausting -I am a bit numb.
Luckily, I am blessed with an army of incredible people, to support me and I have to say that the love and support you all have shown over the last couple of weeks (and years) is nothing short of amazing. I could not do this without all the energy and positive vibes coming my way. 💚💚💚
Sending tons and tons and tons of love and positive vibes to you Jenith!! ❤️, Kristi
ReplyDeleteThank you so much! Love your "name" - all the things I love too! 💚💚💚
DeleteFingers crossed with petscan. Continuity of care for sure on that appeal. UCLA is the best for Lymphoma and everyone around knows it. See if your Ceders doctor will tell your medical group your case is outside his realm of expertise, or he wants you with your previous doctor. That's how my mom got to UCLA with her HMO and got to go out of network for Leukemia. They sent her to Ceders too, then she got the ceders doctor to tell her medical group to authorize UCLA because that's where he wanted her to be. He told them her case was beyond scope of his practice/expertise. There are ways. It's an all day everyday job managing your care at this level for sure. I'm so sorry for all of this. Breaks my heart. But I wont boggle you down with too much emotion here. Because fighting this shit is what is needed and strong support. Here for you. Thank you for keeping us posted.
ReplyDeleteShondra- thanks for the message and info about what worked for your mom. Someone else mentioned I could also pay out of pocket (if needed).
DeleteI will meet with new doctor while appeal is being reviewed and go from there. My hope is that the cancer has not spread (of course) and that the need for UCLA or Cedars for further treatment is a moot point. Fingers and toes are crossed. Still waiting to schedule darn Petscan. Thank you “Greater Newport” - you suck. 💚💚
Awesome post, you have shared an informative article about ct scans . Your method of writing is great. Keep it up.
ReplyDelete