Life has certainly been a whirlwind the past couple of months and I’m looking forward to it slowing down a bit in the next couple of weeks before we take our big trip to Ireland at the end of the month! Over the past two months we’ve been dealing with getting to the bottom of my health and trying to improve the health of our special needs pooch, all while I’ve struggled with a very strained voice. Our weeks have been one medical appointment after another including four trips to NYC in just five months. But there’s been some promising news at the end of it all, so let’s recap where we are at:
Don’t Speak
No, you just won’t know what I’m saying because starting tomorrow I legitimately am not allowed to use my voice for two weeks. Many of you will be amused by this as it’s not exactly a secret that conversing is one of my favorite past times! Tomorrow morning I’m heading to our local hospital for vocal cord surgery. After a camera sent down my nasal passages confirmed a polyp on my vocal cords and a second look confirmed that it wasn’t improving weeks later, it was determined that I either need to accept the cracking, scratchy voice I’ve had for three months as my own, or have the polyp removed. There’s no guarantee that my voice will go back to 100% but leaving it as it without trying to improve it just wasn’t an option, it’s been quite frustrating. I’ll be put under anesthesia and a CO2 laser will be used to zap the polyp. Then starts the no talking for two weeks, and hopefully I will have improved vocal range by the time we pop across the ocean. In the meantime the plan is to go everywhere with pen and notepad in hand, so old school!
No Pain, No Gain
Let’s cut to the chase. Bone marrow biopsies are painful, I mean ungodly painful! Occasionally I’ve had people say that it wasn’t pleasant but wasn’t as bad as they expected. I seriously need to get the names of whatever drug concoction they were prescribed for future reference because the Valium and Percocet mixture I had was not cutting it. This was my third biopsy and my first in NYC. My first biopsy was in March 2015 in Ithaca and my second was in May 2015 in Buffalo. Truth be told I’m still a tiny bit sore from this most recent procedure site and I cringe at the thought of those Lidocaine needles tapping my hip bone before the bigger guns came out. Two injections sites to extract marrow and a third site to extract a bone sample. Three pulls to get each marrow sample out and ten cranks to pull out the bone. I was so fixated on the counting because I just wanted the nurse to stop, in fact I begged her to stop! My husband was a trooper for sitting right there through all my screaming, how awful to see someone you love be put through so much pain. After it was over all I could do for ten minutes was to sit and sob. We drove four hours back home to Ithaca that night. It may or may not be legal to fully recline the passenger seat and ride face down on your belly but it was the only way I could remotely get comfy. The next two weeks trying to sleep, sit or sometimes even move were brutal. I truly hope it’s a long time before I have to go through that again. The results were back in within a few weeks but we had to wait six weeks total to be able to get back to the city and see both my specialists…
I’m Sorry, Can You Repeat That?
Those of you who had to deal with getting a diagnosis or medical test results can likely relate that at times you are sitting there with a doctor rattle off a laundry list of information, and sometimes it’s more like sitting in front of the TV as a kid with that Micro Machines guy saying 1,800 words a minute in those commercials. It’s a lot of information and a lot of new big words, that rarely the doctor stops to elaborate on unless you ask. Again, my husband is a rock star when it comes to care giving. Always prepared with either the notepad on his phone or his laptop, typing the words as they come out of the doctor’s mouth. I highly recommend having someone with you that can help advocate for you in these kinds of situations.
Without further ado, here are the results:
- There is no sign of a Myelodysplastic syndrome (aka preleukemia) which was the concern with the evidence of a T-cell population in my blood. That’s not to say the T-cells won’t ever turn into one, but for now they are just hanging out (who invited those guys anyway?!).
- The T-cells are causing the low white blood cell and neutrophil counts that I shouldn’t be having yet. There are medications that could help lower the T-cells and increase the white blood cells and neutrophils but there are side effects. Since I haven’t been having infections, the doctor prefers to monitor my blood every two months with no medication, so long as I stay healthy.
- The plasma cells taking over my bone marrow are around 20-30%. Previously they were 25% in March 2015, and 10% in May 2015. Normal ranges are 1-5%, but these latest results indicate no real change in the plasma, thus the Myeloma truly is currently stable.
- With the introduction of the new (CAR) T-Cell trial as well as several other new drugs on the market there is new hope on the horizon for Myeloma. We’ve been told that by the time I progress, that these news options could be a potential cure for me. Yes I said CURE, a word never yet used in Myeloma except for when saying there wasn’t one.
- Why not do the trial now? Good question. One, because it’s not available to people in the smoldering state of Myeloma. In fact it’s really only available to people who have tried everything else first. But the hope is that will all change by the time I need it. And it’s possible to do this trial successfully without chemo AND without a stem cell transplant. Huzzah!
- Kids. A personal and private topic, yes. But something we were formerly told two years would not be in my best interest to physically carry. Now we’ve been told it’s an option, yet in a very narrow time frame, as in before I’m 35 (I’m now 33.5). For those unable to contain their excitement on this topic, just hold onto those britches, we have much to discuss before we decide if it’s a path we want to take.
Life really is a roller coaster, especially at times when you are just longing for some flat, solid ground. As we embark on our official one year of marriage mark our outlook is much brighter and we are feeling blessed. So lucky to have the experience of traveling to Ireland, to see our family there. So fortunate for the support of family and friends near and far. And in love with our life together in Ithaca with two amazing fur babies and the best friends we could ever ask for.
