The last 2 months since finding out I was going to start chemo have been a total blur. Take my normal crazy life, throw in several MORE medical tests and appointments than normal, Jacey’s junior olympics swimming championships in Cali, a visit from the in-laws and my Mom, The Color Run as well as Bryan being on mid shift and I need my chemo time to hurry up and get here, just so I can rest. And they say SAHW/SAHM’s sit on their backsides every day?!
My bone marrow biopsy was on February 6th at a local diagnostics facility. I was a little leary since my last one was WAY back in 2008 and my bones are so hard they literally bent the steel rod they use to core the bone. Alas, my worry was all for nothing. The procedure went well and my pain level was minimal. Tender to the touch but nothing more.
My first bmbx was done in office, under local. This time, it was done outpatient under IV “I don’t care about a thing” drugs and local anesthetic. They also used CT guidance which was different from the last time. I did remember this time to bring my headphones and music. Hearing your bone being hammered and then scraped is worse than the actual procedure. *shudder*
The results were…eh. While I live with my body everyday, it still isn’t any fun to hear to hear them.
The overall findings suggest extensive involvement (estimated more than 50% of the marrow space) by chronic lymphocytic leukemia/small lymphocytic lymphoma.
Then there were labs, labs and more labs. I have had lab work done 3 times in the last month. I really think they owe me a steak dinner by now. I will say, that oncology lab techs have it going on. I had blood drawn at the base lab for the first time in 3 years and I thought my arm was going to fall off. Let’s not also mention the lovely bruise she left me no where near the actual puncture.
My white blood cell count (WBC) is still rising as per the norm. It was 111.8 up from 100.3 in January. The also ran a ZAP-70 panel on me…that’s always a fun one to get.
95% of the lymphocytes are CD19 positive and 15% of the selected lymphocytes express ZAP70 with CD19. Therefore, 16% of the B-Cells (CD19 positive) are ZAP70 positive. Our data shows that patients with >/= 10% ZAP70 positive cells have more aggressive disease.
On a brighter note, I am negative for Hep A, B & C. At least that is a few things to mark off the list.
My CT Scan was on the 12th and I made it without gagging this time. Yay me! It has only taken oh….probably 15 CT Scans to make it to this point. Yes, I am a difficult case. :-)
My results weren’t really all that shocking. Normal slow growth of my lymph nodes, adding slight enlargement of my spleen. This is a symptom most CLL (chronic lymphocytic leukemia) patients have, so I consider myself lucky that it took 6 years to start affecting me. I do have a few lymph nodes that are REALLY starting to bother me, especially in my neck. I am anxious to see the effect chemo will have on them and how quickly, because this nerve pinching thing really needs to go.
After all the tests, I had my appointment with Dr. T. We discussed all the results and opted to start chemo soonly. She reiterated to me that I would be on FCR chemo for most likely 5 rounds. She put in a referral for me to get a port placed ASAP and scheduled me for my chemo class and first round of treatment.
Nellis captured my referral, so I will have my port placed on base on April 2nd. Not exactly thrilled, since I haven’t had anything done on base (besides those pre-op labs last week) in over 3 years. Shortly after we moved here, I was approved to be off base and have been since. Now the gov’t is trying to save money by forcing people back on base. Fun stuff. Not.
Then on April 9th, I start my first round of treatment. I wish I knew how I was going to feel, so I can plan life around it. I’m very VERY independent and not very good at asking for help. Bryan’s new commander seems fantastic but his “e” and “o” supervisors are frankly, well… What is that saying, “if you can’t say anything nice, don’t say anything at all”. They’ve had a year and a half since Bryan moved to the squadron to prep for this (he told them immediately upon arriving) and are now deciding that he has “a lot of appointments scheduled”. Imagine that. I am a cancer patient, what did they expect?!
Last week, I had my chemo class and while I knew this was coming and have for a long time, walking into this ^^ made it all become REAL. I’ve seen other infusion rooms, but seeing where you are going to spend a good chunk of your next 6 months is daunting. It was cold, drab and emotionless. The chemo nurses that led the class were not friendly at all and the one that did the treatment plan review treated me like I was an idiot. Not at all what I envisioned chemo nurses to be like. I mean, where is the compassion?! Thankfully neither one was my primary chemo nurse, so fingers crossed that she is wonderful.
At this point, I am just ready to get started so I can see the finish line. Life is going to get worse before it gets better, but right now I am just in a holding pattern of sorts, waiting on things to get checked off the to do list. Bryan compared it to finding out about going TDY/deploying. All the prep work before you have to go, when you just wish it would go ahead and start so you could come home.