What does it mean to just be or feel blah? As a noun it could mean a “general feeling of discomfort, dissatisfaction, or depression” or as an adjective it could mean “low in spirit, health; down”. Sometimes I think “blah” is the calm after the storm, as in after a wave of emotions ensues, “blah” is what you feel after the tide settles. Neither happy nor sad; emotionless. Blah is how I can best describe my mood after my check in at Roswell yesterday. Things remain stable yet there were some unexpected conversations and events, both good and bad.
We started the day with a stop at our favorite juice bar in Buffalo for breakfast, and after digesting the amazing food we made our way to the CO+OP market to get one of their yummy flourless, sugarless brownies to have as a treat after my blood work. There was virtually no wait for the blood work or the bone density scan. When I met with my BMT specialist he reiterated that that there was still a chance that I might not ever have to do treatment and that I could start meeting with him yearly rather than every six months. The bone density scan also showed no traces of Osteopenia in my left femur that was present a year ago. All along I thought I was just trying to prevent it from turning into Osteoporosis not knowing the Osteopenia could be reversed. I’m crediting my calcium rich clean diet for helping out with that in addition to the D3 supplements that I take daily.
THE UNEXPECTED (A.K.A. -THE BAD)
I had about 10 vials of blood drawn at the lab and for whatever reason that needle hurt much worse than the last few draws I’ve had. During our time at the BMT clinic the nurse didn’t mention CBC results, and it was then we discovered that the CBC hadn’t been ordered (even though I specifically requested it through the patient portal) and I would have to be poked again. I spent the whole week abstaining from alcohol, eating well and exercising and couldn’t wait to hear if my neutrophils (immunity) had come up. Now I would likely not find out the results till the next day. If the CBC would have been done with the rest of the initial vials, I would have received the results at my BMT appointment. THEN there were the vaccines. I ended up agreeing to a 3 in 1 vaccine that apparently would be three separate shots if I did them in Ithaca. Since my body wiped out all of my childhood vaccines I’m supposed to get them all again though no one can say if my body will wipe them out again. And you all know from previous posts how much of a baby I am when it comes to needles.
I was only prepared for one needle poke yesterday and it turned into three. At the end of it all I was laying on the bed with three bandages between my two arms and tears in my eyes. But to be honest I don’t know what tears were from what. During the appointment the topic of our wedding had come up and my doctor asked about kids (warning, slightly personal info is about to be released). A year ago we were a young couple, not yet engaged, I had just been diagnosed and we were thrown into a meeting with a fertility specialist because I would be unable to have kids after treatment. It was a lot to take in on top of a diagnosis, with no plans just yet for marriage and no discussion between us regarding children. Luckily I never had to make that big decision as I didn’t have to start treatment but I wasn’t expecting what I’d be told just a year later. We both have been undecided about kids and knew we’d be blessed with a full life even if it was just us two, but in my head it was always our choice alone either way. In that moment it all changed when my doctor told me it’s not recommended that I ever become pregnant as there is no telling how my body would handle it, and it could cause me great harm. Yes, I am beyond fortunate to be in either the MGUS or Smoldering state of Myeloma. I am not active enough to treat. But my white cells and neutrophils are not indicative of the majority of people with MGUS or Smoldering Myeloma, they run much much lower. I am a rarity and no one knows why my body acts the way that it does.
Case in point I am now on antibiotics for what appears to be a simple bug bite. My left elbow is swollen, red, painful, and warmer than the rest of my body. The doctor said I have an infection and I told him this is the second time this has happened in a matter of months and has otherwise never happened. For me there is great risk if I contract a serious illness with how my body would be able or not be able to fight it off. Adding a growing life inside of me poses great risk to my life and it is something I pondered might be the case before having my doctor confirm it. But still the fact that it wasn’t really my choice any longer brought on the water works and just made me angrier with this disease taking yet a tighter hold over my life. We briefly discussed his suggestions of surrogacy or adoption but honestly this roller coaster of a disease is about all I can wrap my brain around at the moment. The wedding and my health are the two biggest focuses, anything else is a discussion for another day, or year rather.
ANGELS HERE ON EARTH
We sat in the examination room in two basic chairs waiting for the nurse to come back with my vaccine while I tried to let everything the doctor just told me sink in. In comes this lady who looked Preakness ready in her fancy black and white clothes and giant wide brimmed sun hat. She had with her a cart of various things and then offered us a piece or two of candy with a big, friendly smile. I politely declined and stated my usual “thanks but I don’t eat sugar” statement, after which she pulled out the “secret” stash of sugar free candy. She then asked what kind of cancer I had, to which I gave her the quick one minute version and she proclaimed that she had something just for me. Out came this bag of silver tokens and she told me in order for it to work I had to close my eyes and reach into the bag and pull out one trinket. She stressed the importance of closing your eyes and sensing which was the right one to pick. So here is what I made out with and yeah there were more tears lol:
STILL FINDING STRENGTH
As I mentioned, I was still waiting on CBC to come back. I finally heard back this morning and while things came up a tiny bit (neutrophils are up from 300 to 590, but 1,500 and above is normal) I still feel defeat and frustration over everything, especially when I’ve worked so hard. Yes I am still blah, I am not myself and it might take a day or two more to shake it. But I have new found strength even if it’s not my own. I’ll get mine back, I always do.