MONDAY- This was originally supposed to be the easiest day for me. All I had scheduled was a session with my therapist. While I was there though, I decided to kill two birds with one stone and get my bloodwork done (I was originally getting it done Tuesday). Sadly this was a big mistake as I don't normally go to this lab and the usual guy I go to didn't work at this location. There was one person there, he could hardly speak a word of English, and was ABSOLUTELY HORRIBLE when it came to sticking people with needles. I think he got me at a pressure point or something because my arm was badly bruised afterwards and pain was shooting up to my shoulder. He couldn't even wrap my arm up properly with pressure...needless to say, I will never go back there again.
TUESDAY- Since I had the horror show of getting my bloodwork done the day before, I didn't have anything planned...instead I tried to rest my beaten up arm and was on a strict diet for tomorrow's appointment. Then I get a phone call from my oncologist to discuss my upcoming appointments...and in the middle of the conversation he went very serious and said something that has been echoing in my head lately. He said that because I've never been in remission and had no response from two treatments, I'm what you call "Primary Refractory" (very rare) and my chances of ever being in remission are very slim...pretty much at 20%. My odds aren't great but we both decided to keep moving forward and fight for that cure....I didn't exactly sleep well after that phone conversation...
WEDNESDAY- Today was PET scan day. Which meant I had to roll out of bed at around 5:45am, get changed, and head out to the center of Washington DC in the middle of rush hour traffic to get a scan that can take up to 2 hours to complete. Thankfully one of our family friends, Linda, decided to help us out and drive me to and from my appointment which made for an interesting ride. Haha! This way my mom could catch up on sleep since she came home at 1am from work. The scan went well...so much that I actually slept through half of it and got out 15 minutes earlier than expected. Later that day, my mom and I met up with Linda again and had dinner...I had hardly any appetite and what little I was able to eat, sadly didn't stay with me for very long and I had a rather sickly night.
THURSDAY- The day I was dreading the most...I was scheduled to meet with a top specialist from the National Cancer Institute (NCI)...but in order to get that appointment I had to spend hours of waiting and being carted from one room to the next. After going through intense vehicle inspections and finding my way through a maze of a parking garage, I went to admissions where I registered as a patient. I was surprised to see the lady handling my case was so rude, never smiled, and acted like I just didn't exist. That already gave me a very negative vibe. Next, I was sent to the wrong floor where after waiting 15 minutes in the waiting room I was told where I was correctly supposed to go. I went to get more bloodwork done and by this point I was already on edge. Then I went to the 12th floor for a head to toe physical. After the physical the fellow said that it was going to be up to an hour wait in the room until I met the specialist.
So I decided to pass the time by calling my mom while I waited. I had convinced my mom not to come with me because she already had enough on her mind with the phone call I got on Tuesday and I didn't want her to wait around during tests and things I can do on my own. So we passed the hour by talking on the phone until I heard footsteps on the other side of the door. Then all of a sudden an army of doctors filed into this little room...one of them even wearing a public health officer uniform which was very intimidating. I felt like I was contagious with some rare strand of Ebola or something. The way they looked at me made me feel like I could die at any moment. After they introduced themselves they just stared at me for a few seconds.
The man in the uniform did most of the talking and asked me detailed questions about the start of my cancer all the way to the present. He then continued to my options...he strongly advised I stay away from chemo and go with an immunotherapy, as my body seems to reject chemo treatments and it will only make me weaker. He said that the immunotherapy can be followed up with a transplant...not just any transplant....a donor transplant. My original plan to use my own bone marrow was now off the table simply because my own cells are trying to kill me. Then he went on to say that with the transplant I have a 1/3 chance of being cured, 1/3 chance of having complications and inevitably dying from them, or a 1/3 chance I simply don't make it past the transplant at all. But I have a better chance of surviving this with an immunotherapy rather than a chemo, because the immunotherapy is less toxic and I can build up my strength. The only thing that worried me at that point was...who is going to be the donor. My siblings have to be tested and I didn't want them getting involved in all this. I was devastated. I met up with my mom and Linda afterwards, and they treated me out to bowling and a makeover to get my mind off of things...after a good cry of course. I'm just happy they were there for me when I needed them.
FRIDAY- This was the day I was going to speak with my oncologist and discuss what the next step was going to be...the only problem was, I waited by the phone all day and never heard from him...I even had a set time I was supposed to expect him to call but the call never came. I sent him an email hoping I'd hear back the next morning...
SATURDAY- I waited by the phone and had my email open most of the day and again didn't hear back...I was beginning to worry that something might be wrong...
SUNDAY (today)- I finally got a call from my oncologist...apparently there was some sort emergency with a patient when he was supposed to call me on Friday. We spent a good 30 minutes discussing the pros and cons of my options when we finally decided that we are going to go with the immunotherapy and potentially a donor bone marrow transplant later down the line. I'll be getting treatment once every 2 weeks and hopefully symptoms won't be too bad. There's no set end date for how long I may be on this as it was only approved a couple months ago, so there are no long term statistics.
So with all this information that I've gotten over the course of 7 days...I feel like I need a serious vacation as an escape to get away from it all. I haven't cried over this since Thursday but I do have this lingering question of "what has happened to my life?"...my odds are no longer very favorable and I don't really know how to take this. I don't know what this means for my future or the plans I once had. I worry about my family and friends and how they will take to this news. All I know is that I have to live every day to the fullest, keep fighting to stay alive, and just give thanks for every moment I get.
