Today was my follow up with Dr. Borst, well Michele.
We went over my PET Scan results OFFICIALLY! Ha ha she calls me or texts messages me all the time so I knew what my results were on Monday. I love that about her. I have her personal cell phone number and I am able to call or text her if I need anything at all. She is just fabulous! :)
So we went over my PET results again, she told me the nodules on my lungs aren't showing up as cancer, but that we aren't really sure what it is exactly. Could be something as simple as an infection that settled in my lungs. We just aren't sure yet. She is referring me to see a Pulmologist (Lung Specialist). That appointment is this Friday 03.08.13 @ Noon. I have been keeping in touch with the wonderful and amazing Dr. Melody Rodarte. (I use to work for her) She is the one that pulled strings to get me in as early as this Friday. I owe Dr. Rodarte so much!! She has been in my corner cheering so loud and pulling strings whenever need be, asking her colleagues to do her a personal favor by seeing me. I love you Dr. Rodarte and THANK YOU SO MUCH!! :) My Pulmologist will be Dr. Amy Bohan. It will be so lovely to drive 5 miles to see her vs. 35 miles to down town Phoenix where the rest of my Specialist are. Dr. Bohan will hopefully be able to tell me what is going on with my lungs! Fingers crossed and prayers I don't have to have a lung biopsy!! This is what was recommended from the PET report. A lung biopsy will use a needle to pull out some tissue from the spot on my lungs to be tested to find out what it is.
I had my weekly labs done today, and of course my levels are still LOW! CRAP!!! :( My platelets were 42 today, again 120 is normal range. So Michele is going to be referring me to see a Hematologist (Blood Specialist). To see if maybe there is a underlying reason as to why my levels have been this low for about 8 weeks now. Maybe it has something to do with the funk in my lungs?? We just don't know. So I should be hearing from her tomorrow (I am hopeful) on who the Hematologist is and when I am scheduled to see this doctor. Again I have asked Dr. Rodarte for her input and we are going to see if she can get me in with Dr. Sumeet Mendonca, and SOON!
While at the appointment this morning with Michele she let me know they have scheduled me to see a Dr. Michael Gordon. He is a Clinical Trial Oncology Hematology doctor. I will put it the same way Michele did when she told me. "You are a mystery, you have been since you were first diagnosed. Nothing about you is normal. Not your age, your diagnosis, your cancer, your lung funk, or your treatment, symptoms, nothing is normal about you, your a mystery" So, Dr. Borst would like to send me to see this Dr. Gordon, he values what Dr. Gordon has to say. I will see Dr. Gordon for a consult only at this time. He does clinical trials, so he is doing the latest and greatest testing. Dr. Borst would just like a fresh pair of eyes to look at me and give some suggestions and input. If the lung funk turns to cancer (which is still a possibility) then there is a possibility I will be in a clinical trial with Dr. Gordon. Which just this being a possibility is a little funny to me. Not funny "hahaha great joke" kinda way, but when I was first diagnosed I followed up with Dr. Rodarte (she was my PCP at the time) and she told me "you might just end up being a clinical trial" and here all this is coming out. My appointment with Dr. Gordon as of this very moment is scheduled for next Friday March 15th 2013 @ 1pm. He is in Scottsdale. As of right now it is just for a consult and nothing more. Try not to freak out like I did when hearing that news! ha ha :) I am going to try and get this moved up to early next week if they have any openings!!
I asked again when I could return back to work and Michele is hesitant to send me back to work, but some issues have arose and I will need to return back to work ASAP!! My STD (Short Term Disability) has run out as of TODAY, yes I said TODAY. I have applied for LTD (Long Term Disability) but if I am approved for that I will no long be considered a Banner Employee. Which means:
A) I won't have a job.
B) I won't have health insurance.
C) No income.
SO...I have one last paycheck coming in tomorrow and after that I will not be getting a income at all. Unless I go back to work. So I will need to return back to work ASAP. No problem right? WRONG. I work in a "call center" type job. This department within Banner has a policy that if you do not have PTO in your "bank", you are not allowed to even request a day off work, even if the day you need off is 7 months down the road. So for example if I needed this Friday off for my doctors appointment and I didn't get PTO until Thursday I am not able to request Friday off until Thursday when I have PTO in my bank. That being said I am in a sticky situation. How do I got back to work with all these upcoming doctor appointments scheduled? I don't have PTO to request these days off or half days, yet if I don't go back to work I won't have health insurance or an income. I called my supervisor this afternoon to see if I could at least return part time for the time being, which will turn into full time as soon as I get this all cleared up. So I am able to keep my job, and health insurance and over all status at Banner, but I have some room to breathe and still attend my appointments without having to use PTO that I don't have, or getting written up for my attendance. My supervisor will have to talk it over with the department head and see what he says. I am hopeful they will be able to let me work part time around my scheduled appointments. I am trying to get all these appointments scheduled this week or early next so I can return that much quicker to work and be full time and not part time. I am not able to apply for STD again until I have worked 1200 hours. So God forbid this lung funk turns to cancer and I need treatment again I am not sure what I will do. Apply for AHCCCS I guess, as far as income...I don't know what I will do. I guess cross that bridge if it comes. I pray it doesn't.
My stress level went from 5 to 15 in one day!!! What the heck! That all being said I ALSO saw Dr. Zaky today. If you remember way back when (ha ha to September) she is my Radiation Oncologist. (The one that administered the radiation therapy) We met and she did yet another physical. I tell ya I have had more physicals in this past year than I have my entire life!!! She saw a spot inside that as she described it appeared to be a little dry and irritated, it was even bleeding. We will keep an eye on it and make sure it doesn't develop into anything. This of course comes secondary to the funk in my lungs. Overall the visit was pleasant and I will follow up with her in 3 more months. I hope by then my hair is long and beautiful and I am living a normal life cancer free.