I've been waiting to post until I have more info, but have been in limbo long enough over the past week that I need to get it out there. I so appreciate that you all care and want to know what's going on. As described in my last post, what's going on is very complicated.
My PET scan last week came back clean! This is my FIRST clean scan since I was diagnosed in September. This is huge and means that I am eligible for the stem cell transplant. This happened much faster than my doctors anticipated. Yay!
The annoying news: My doctors at UCLA and Cedars Sinai are working to get on the same page as to wether I need another round of IGEV chemo before transplant. I was supposed to go in for IGEV yesterday (6/30/15), but that's on hold until my doctors get on the same page. If they can get the insurance process moving quickly enough, then I won't need another IGEV. If not, then I will need another round, because the longer I wait between the last round of IGEV and the stem cell transplant, the higher the risk that the disease comes back prior to transplant. This could potentially lower the efficacy of the transplant. Think of it like a bacterial infection. If you wipe it out only partially with antibiotics and let it come back, it can be more resistant to the drugs. Same deal with Hodgkin's. Don't worry though, we are still in the "safe" zone and the doctors will not let too much time pass.
In the interim, Allison and I went to Cedars yesterday for a "Pre-transplant Workup" that lasted about six hours and consisted of an EKG (heart), echocardiogram (heart) and pulmonary function test (lungs - translation: blow into a tube until you get a headache and black out), meetings with a nutritionist, social worker and the bone marrow transplant coordinator and a tour of the blood donor facility where they will harvest my stem cells. It was an exhausting day, but was amazingly efficient. The transplant coordinator, a nurse practitioner, named Lety squired us about the hospital and made sure everything ran smoothly and quickly.
NOW TO VENT
The funniest/most absurd thing that happened yesterday was as follows. My oncologist at UCLA prescribed medical marijuana to mitigate chemo side effects. It is a Godsend when it comes to nausea, neuropathy, anxiety and sleeplessness and causes none of the side effects that the individual medications to treat the above-listed chemo side effects do. Despite the fact that my oncologist, a doctor, prescribed it as a legal medication, widely recognized to help cancer patients, to me, a cancer patient who has had 20 chemo infusions in the past 10 months, Cigna decided that I am "at risk" for substance abuse and required me to sign an "Abstinence Agreement" as a condition precedent to Cigna covering the transplant and consent to random drug and alcohol testing. That's right, I am no longer allowed to use a medication that my doctor prescribed and I am, in Cigna's eyes, an alcoholic, despite absolutely no evidence to corroborate this absurd supposition. Not only did you (Cigna):
- make me switch hospitals from UCLA to Cedars for my transplant, despite the fact that I've been treated at UCLA for 10 months, which has caused me to spend 50-60 hours over the past few weeks on the phone coordinating the handoff between hospitals, which is still a mess, and wading through knee-deep bureaucratic bullshit, which may cause me to get a session of IGEV chemo that I don't need because it's hard to get doctors from two hospitals on the same page, but also;
- to add insult to injury, you've now flagged me a a substance abuser based on absolutely no fact other than my medical records show that my doctor prescribed legal medical marijuana to me in order to mitigate chemo side effects.
Are you effing kidding me!? Would you make a lung transplant candidate sign an abstinence agreement swearing that they would not use opiates prescribed by their surgeon during and after the surgery for pain management? No, you wouldn't, because that would be REALLY STUPID.
REITERATING THE GOOD NEWS
My venting and administrative nonsense aside, all that matters is that I responded very quickly to IGEV, my scan is clean, and regardless of whether I have another IGEV, I will be moving forward with transplant. This is VERY GOOD NEWS. If I don't need another IGEV, my transplant will likely start the week of July 20. If I need another round, then it would likely the following week (July 27, 2015).
Thank you, thank you, thank you for your love and support!