Post-Bone Marrow Biopsy Check-In, and Humbled Gratitude

Hello! I wanted to check in and let you all know how I am doing post-bone marrow biopsy. As of right now, I'm feeling well! The biopsy was kind of interesting... I got all ready and my IV in upstairs, then they wheeled me down a floor to the area where they do lung scopes, because they have the means to use sedation in that area. Once we were in the procedure room, the nurse got me ready - sticky things onto my chest for the heart and respiration monitor, getting me onto my stomach and keeping the cords untangled, etc. They let Hubs walk me down there, and he ended up staying the whole time. I told them he could wait in the corner (ha) but they let him stay right up by me and hold my hand throughout the procedure. It was pretty mild as procedures go: clean the area, stick some needles in to "numb" it, make a little incision for the bigger needles, stick in the bigger needles, get syringes of fluid, and again needles in, bottle up the samples and send them off to the lab. (This is the run-down that Hubs gave me.) The process was simple. What wasn't so simple was the fact that the doctor was going into my bone - my pelvic bone in my back, to be exact, in between my left hip and spine. Hubs said that at one point the doctor was tapping, tapping, tapping (kind of like hammering) to get into the bone for the samples. ::Shudder much?::

I am told that I was dozing for just the first minute or so. As soon as the needle for lidocaine went in, I cringed and said, "Ouch!" They had to keep going with that, and I repeated my cringing, flinching and "ouch"-ing. Then when the real needles started, I really yelped and was saying, "That hurts!" and crying. That all went on until they finished. :(
I'm glad I don't really remember that, although I have a weird dream-like deja-vu memory of it, and I woke up in recovery crying. (SO strange to me that I have no recollection of getting off the table and into the stretcher to be wheeled back upstairs - but Hubs said I was 'awake' and did it myself. Trippy!)
My poor doctor, he called me twice -later that evening and the next afternoon- to see if I remembered and how I was doing. I think he felt really bad. He is really compassionate; the nurse told me that most of the hematologists don't give their patients anything for this procedure. I have to give that a big, "OMG - are they crazy?! I wonder how they get any samples?!"

Recovery was simple, except it took me a long time to get the drugs out of my system. We got to go home within the hour after the procedure, but I took almost a two hour nap once I was at home, and stayed groggy all night. I was bummed that they gave me more sleepy juice when I was yelping, because it clearly didn't work quickly enough to inhibit the pain or my reactions, but it stayed with me all night. Icky stuff, but a blessing to have, too.

My doctor called that evening to say that a quick look at the bone marrow show it looks "quite healthy" (yahoo!!) and so in that case, he's going ahead with his hunch (after putting all the pieces of my recent and past health history together, which he did quite thoroughly in our pre-biopsy consult), that it is my immune system destroying platelets, something like the condition ITP. So he prescribed me a four day Rx of Dexamethasone, which is like a super-Prednisone steroid drug, to hopefully get my immune system to calm down. It was very interesting learning that this condition affects a lot of young women that he sees in his Hematology practice, and that often it can happen after a viral infection - your immune system is working hard to fight the virus, and it can "misfire" and start destroying platelets along with viral cells. Fascinating, and totally fits with Emily's immune health nonsense, right? (Haha.) Have I mentioned I would like a new immune system for Christmas? :)
On the positive, of course, there are too many things to list, but one huge one is that I'm grateful for an immune system that works overtime, instead of not enough!

So I'm on day three of the Dexamethasone, almost done, and it's not bad. I even get to continue breastfeeding for most of the day, I just pump in the mid-day when the dose is highest in my body and feed Vicky at bedtime and in the morning. She is so in love with nursing, still, it is so sweet, and I'm grateful I didn't have to take something that would have been incompatible with nursing. Weaning her abruptly would be traumatic. Another thing to thank God about! (By the way, I did check with my friend who is a brilliant pharmacist, and also with Vicky's pediatrician. Always good to make sure about these things rather than not informing yourself of any risks.)

One more thing about the biopsy:
My doctor is awesome - I asked him at the end of the consult if we could not do the biopsy if my platelets had gone back up to normal (they would draw a sample to test once I got my IV in), and he said sure, without even looking at me funny. I think he sees people with some faith occasionally :)  The gals from the lab came in to the procedure room right after my doctor, with their special sample-gathering equipment, and delivered the news on my platelets: they were down to 10,000 - that or below that is considered "critical." Yikes! My doctor looked at me and said, "It's good we're doing this then, just in case," and I agreed.

Tomorrow we re-check my platelet count. I am believing it will be back to normal! The exciting thing about this condition is that after this short treatment, it can disappear (or go into remission) FOREVER. Please agree with me in prayer for that outcome!

Speaking of prayer: Wow, I have been so humbled by the prayers of my Christ-following friends and my church family - my strongest teammates in life! They (some of you reading this!) are lifting me up to the Lord in mighty prayers, and I want to say thank you again! I really felt it yesterday in my body! Yesterday I woke up with NO MORE PAIN at the biopsy sight. It didn't hurt all day, until I was running through a parking lot pushing Vicky in her stroller and it just ached like a little bruise for a second (yes, I was running and pushing the stroller, and we were both laughing our heads off! It was the best!)
But back to what I was saying - I'm so thankful for a church that is family; just like God designed it to be. I am grateful for so many believing with us that my healing is on its way. I'm so thankful that God placed Hubs and I in our city four years ago this month, where we knew no one, and drew us into an incredible church where we knew not one person but each other, but knew right away that it was HOME.
I would be a messy mess without my church, without the wisdom, encouragement, and sense of belonging and purpose I receive from being a part of that house. And I am so, so grateful that somehow, although I feel like I don't contribute a thing compared to what I'd love to contribute since my health really took a turn, somehow our little family has been endeared to so many special people, and somehow it seems God makes our hearts and love and commitment to our church shine through even if we're absent more than we'd like, and not able to serve as much as we want to serve.

What a gift to know I am loved and not looked down upon one bit, and that so many of my teammates just want to see me whole and well again - BETTER than before. That reminds me of the heart of Jesus. I love you, my Champions Centre family!

[Bone Marrow Biopsy] or "Should I Start a "Medical Bucket List?"

How was your week?

I can't really remember past yesterday, as it was a completely exhausting day and my brain decided to take a short strike, I think. :)

I titled this post, "Should I Start a 'Medical Bucket List?'" because lately, it seems like I am setting personal records and doing things I've never done before -not in sports or business like perhaps I wish I could, but in the hospital arena. I set a new record last week - 15 vials of blood drawn in one sitting. And on Monday, I will be seeing a hematologist (already done that - nothing new there) and getting a bone marrow biopsy (that one is something for the 'bucket list').

It all started when on Thursday I went into the lab to get some blood work done, in preparation for a check in appointment with my Rheumatologist coming up this Monday. No big deal, just some basic's: CBC (blood counts), CRE (inflammation levels), etc. No  big deal, I thought. But Friday morning when I woke up, I had two voicemails waiting for me, from that familiar phone number of the hospital's main line. I've had that experience more than enough times, and know it's not the beginning of a quiet day. Ugh...

The first message was from the infectious disease (ID) doctor I saw last week; she was calling to discuss the results of my 15+ blood tests. The second message was from my hepatology nurse practitioner, who was contacted by the ID doctor because of some unusual numbers that showed up on my CBC. I called each of them back, eventually got in touch with both practitioners, and learned that the results from last Friday's fifteen plus tests were looking good. No infections, no viruses, nothing showing up that pointed to why I had those swollen lymph nodes. That was all good news.

Then it was explained to me that the blood work done last Friday, as well as the blood work done on Thursday, had come back with concerning platelet counts. They have over ten years' of records and my platelets have always been stable. Early September they took a drop from 200,000, and now they are below 50,000. The term for low platelets is Thrombocytopenia. This is concerning because platelets are what causes your blood to clot when you are bleeding. A count this low can lead to serious problems if you are in an accident, and if they get lower you can bleed/hemmorhage spontaneously. (Yeah, yikes!)

So, my medical team got on the case. My ID and my Rheum talked to my liver nurse, she talked to a hematologist, and the hematologist worked me in to his full schedule for a consult and the biopsy on Monday. I got between ten and fifteen phone calls from nurses, doctors, nurse practitioners and schedulers yesterday. I had to listen, learn, ask questions, process, wrap my mind around everything as best I could, explain it all to Hubs, and once everything was rearranged, scheduled, and understood somewhat, I had to ensure our sweet Victory had someone to hang out with and that I had a driver. Talk about [MENTALLY EXHAUSTING].

What an exciting start to the week- getting a needle stuck into my back. Isn't this a lovely illustration of the procedure? 

Even though that man is just a drawing, he looks so uncomfortable I feel compassion for him! Totally tense and cringing! I'm grateful that the Hem Dr. decided all on his own to give me something "to make you still like us," as he put it. When a doctor flat out calls something "rather painful," instead of using their typical underwhelming words like 'pinch' or 'discomfort,' you know it will be an experience.

So my rockstar med team is looking at several possibilities of why my platelet count dropped. They are looking at:

• Infection. Likely not this, because I just finished all that testing and all looks good.
• Immune reaction. (ITP) Your body can mistakenly destroy platelets if it thinks they are a threat.
• Cirrhosis. My liver supposedly has microscopic cirrhosis throughout, and this can affect platelet counts.
• Autoimmune disease. Active autoimmune disease like RA and lupus can mess with platelet production. My body is messed up with autoimmune reactions, and this is my hunch as to why the platelet counts are screwy. We'll see. I think my Rheum was looking at this possibility when he ordered 14 tests for me today - checking every possibility.
• "Bone marrow problems." Hence the bone marrow biopsy. They didn't say exactly what they mean by "problems," but it could be a number of things. They want to make sure my bone marrow, where platelets are made, is doing what it is supposed to be doing. The Hem I will see is well respected and a rockstar in his field, so I hear, and I know I'm in good hands as far as getting any answers in the biopsy.

Something else that can affect platelets is an enlarged spleen. I was told after my last CT scan (last spring I think?) that my spleen was a bit on the large side. Hypersplenism (swollen spleen):

Two applicable ways this can happen are from liver disease/cirrhosis and, "Various connective tissue and inflammatory diseases."  I found that very interesting, as that is what I have with polyenthesitis, diagnosed by my Rheum last year. Perhaps that will turn out to be something?

But that's it for now. I'm on strict orders to do no high risk activities, watch for large bruises or nosebleeds, take it easy and go to the ER immediately if I have any bleeding. 

Let me tell you, I am ready to be done with medical tests and appointments and all of this for a while. Hopefully Monday's test and the following rigamarole will be good, my platelet count will climb back up, and my little family and I can go away for a little trip. I think we deserve it; it's been one crazy year for this Momma! :)