Diagnosis.

It’s funny how life works. Long story short, after the last post, I was packed up into an ambulance and transported to Cincinnati Children’s Hospital. I arrived there around 4am on Friday and ended up going 33 whole hours without sleep. Every time I would drift off, another doctor or nurse would come in to talk to me or take my vitals or give me more meds. I was having fluids pumped into me, so that resulted in many trips to the bathroom, which wasn’t ideal for sleeping either.

The doctors were able to work me into the O.R. later in the afternoon for a bone marrow biopsy and aspiration. I even got the results that night. LEUKEMIA. Specifically, Acute Myeloid Leukemia (MO7) And it’s in about 50%+ of my bone marrow. I’m not exactly sure what that means, but the doctors so far have seemed really hopeful. Since that initial diagnosis, they have run lots of tests to help determine what kinds of chemo I can handle, and they said, “You have the healthiest body we’ve ever seen for having been through all you’ve been through.” I completely turn that one over to God… That was definitely not my doing!

I don’t actually feel like writing a novel today, so a lot of details are being left out... I’ve been avoiding it for over a week now because it just makes my brain hurt a little to think about. Monday (Nov. 24) We will be spending the day in CInci again for PET/CT scans and lots of talks with doctors to go over the official game plan. I’m hoping to record all of that so I don’t feel so overwhelmed trying to remember it all and be able to explain it.

I do have to say how much Brian and I and my mom LOVE Cincinnati Children’s. Already, I feel incredibly well taken care of, medically. I love that the doctors love that I’m a challenging case. The nurses have been nothing but incredibly nice to me and I just feel like I’m among friends. (I find that most people want to be friends with you after you tell them you are a pastry chef ;) ) The kids were even able to come visit on Sunday and we were able to attend church as a family. Kids are so funny about hospitals. They loved my cool bed with all the buttons, they loved that I could order pretty much any food straight to my room, they loved the play room filled with toys and books and art stuff, they loved how the nurses fawned over them, and they loved, loved, loved my huge TV that had FROZEN on it haha :) It was like a magical wonderland for them :) We broke the news to Miss M before they left. I had consulted with her therapist on how I should handle it before it happened. Her therapist and I both agreed that just telling her the truth about everything but reassuring her would be best. M cried of course, but then I was able to cheer her up and give her something to look forward to when I told her she could do artwork on my bald head :) She just loved that idea and already has a design in her head. It has a peace sign and a bird in it… It actually sounded really artistic when she explained it to me. She’s an incredibly creative little girl. And of course, Little Man just wanted to eat his corn dogs and push all the buttons in the room haha :)

I’ll write more next week. In the meantime, here’s a good website one of the nurses referred me to, to help explain my leukemia: Acute Myeloid Leukemia

And for your entertainment and cheer-uppy-ness, I have fallen in love with this song. It's so happy and perfect for this blog:

Cincinnati Children's and Two ER Visits

We met with the doctors at Cincinnati Children’s and LOVED. THEM. We all could have cried tears of relief on the way home, and my mom said she had trouble getting to sleep due to being so excited :)

They pretty much ruled out bone cancer, although I’m still having them take one out for pathology just to be 100% sure. Bone cancer just doesn’t present itself in the way these bone lesions are. It would be incredibly incredibly rare for it to show like this. This is potentially GOOD NEWS. Bone cancer, in this many places, popping up this rapidly, is REALLY BAD NEWS. I hope I’m not jumping the gun (because I’m still wary of it) but I’m so grateful for that (potential) news.

We are all leaning towards lymphoma. (Infection is still in the running, but I would be FLOORED if that ended up being the diagnosis. I just don’t expect it al this point.)

The interesting thing we learned yesterday is that this may have been SO HARD to diagnose because I’ve been on prednisone. If any of you are familiar with lymphoma, steroids are using to TREAT lymphoma. Sooooo…. Remember back in May when I ended up in the ER, unable to move because or my joints just locking up? The Cincy docs said that it MAY have been the first sign of lymphoma. And it went away because the ER doc put me on a high dose of prednisone, therefore “curing” my symptoms. It also explains why, for the first couple of CT/PET scans they did at MDAnderson, my lesions did not grow, and actually shrunk in some cases... But then, as I started weaning back off my prednisone, the lesions multiplied, the lymph nodes grew and multiplied, and I felt worse and worse.  Is this the answer? I’m not sure…. But it all makes a lot more sense than what any other has told us thus far!

Cincy’s game plan is to bring this to their next team meeting and present it to see what their colleagues say about it. Guess how big their “team” is? 70+ DOCTORS, FELLOWS, ETC. Can I just tell you how relieved that makes me?? *sigh* :) The doc also said that the team will “appreciate the challenge”. I giggle every time I hear my case referred to as a challenge. :)

Then they hope to start weaning me off the prednisone enough to be able to take a lymph node and some bone lesion and diagnose me without prednisone screwing with the results. Their concerns about this is that 1.) I will have a GVHD flare and 2.) if it is lymphoma, it will go CRAZY.

So now we just wait to see what the team says! We should know by this coming Wednesday.

In the meantime, on the way home from Cincy, I started feeling chilled and it just got worse and worse. When we finally got back to the apartment, I took my temperature and it was 101.2… and within the next 10 minutes, it spiked to 103.8. I called the Cincy docs and asked what I should do and they recommended heading to the ER for cultures and antibiotics. So, we got the kids all situated and headed to the ER. We were there from about 10:30pm to 2am. We had two great nurses, I’ve never laughed so hard in the ER :) So once all of that was done, we went home. Brian has been so amazing. He took work off today to help with the kids and let me rest. I slept in until 12:30pm! It was a beautiful thing. I have felt relatively good all day! No sign of fever… until about 4:30pm, I felt “off”. My temp was only 99.2… but within the next half hour it had made it to 101.4…. :( I would have just taken ibuprofen and called it good, but the cincy docs had called me earlier that day and told me that anything 100.4< I had to go in for…. And that I wasn’t allowed to take fever reducers (ibuprofen and Tylenol) because they would mask the fevers.  

So I called my mom and she came down to get me and take me in so that Brian could stay with the kids so they could get decent sleep tonight, and Brian could as well. My mom will be spending the night and helping out tomorrow so Brian can get some work in. I’m so incredibly grateful for her.

As I’m writing this, doctors are coming in and updating me about things. My ANC is 1000, which is not good. Basically, it means I am vulnerable to bacteria/viruses/illness right now. Also, in the time between my ER visit last night to my ER visit currently, my hemoglobin has gone from 11.4 to 10.5… that’s a fairly significant drop. She explained that they expected a little drop since they gave me IV fluids, but this was a much larger drop than that… :(

Oh, and when I spoke to the cincy docs earlier today, they mentioned, if things worsen too quickly, they would have to admit me and move warp speed on figuring out a treatment plan.

I feel like it’s time to cut and dye my hair…

Let me explain... No. There is too much. Let me sum up....

I realize I haven’t given an update in a while. Here are my excuses: 1.) I feel overwhelmed thinking about everything 2.) I’m so incredibly frustrated with adult medical oncology 3.) I’m exhausted and every time I have a free moment to myself, I really don’t want to type out a blog update… I just want to sleep or watch Netflix and escape my life instead.

Where do I begin? I almost feel like I can’t even begin to explain at this point… Like Inigo Montoya on The Princess Bride: “Let me explain… No. There is too much. Let me sum up…”

But let me try:

-May 2014: CT and PET scans at Texas. No diagnosis. Decided to give the lesions time to grow or not.
-June 2014: Back to Texas for a bone lesion biopsy. Results, non-diagnostic.
-July 2014: Back to Texas for more CTs and PETs. Lesions did not grow. Found a mass/thickening in my small intestine with minimal lymph node involvement. Still no diagnosis.
-September 2014: Back to Texas for more CTs and PETs. Scan results non-diagnostic but radiologists suspect lymphoma. Bone lesions grew, multiplied. In my hips alone, my bone lesions increased from only being 3 lesions, to being 8 lesions. Mass in small intestine grew, lymph node involvement increased. Lymph node biopsy. Result: non-diagnostic.
November 2014: I had another bone lesion needle biopsy planned and then an open biopsy in Texas, but we ended up cancelling them because it would have cost us $1600 round trip for both Brian and I to go and the no-diagnosis track record didn’t look promising. Plus, I don’t even want to think about how much money we’d already sunk into trying to get diagnosed there… So we decided to seek other, less expensive avenues and find someone here in Indiana who could do the biopsies and get me a first diagnosis/opinion, then maybe we could think about going back to MDAnderson for a second opinion.

Oh, also, my hemoglobin is around mid-11. Normally for me it’s 13-14. Hemoglobin is the stuff in your blood that carries oxygen and iron… so I get winded much more easily than usual, and it explains my pale-ness and why I just want to sleeeeeeeeep all the time. Example: the other day I took a five-hour nap. I woke up, ate dinner, and an hour and a half later went back to sleep for another ten hours… This drop in hemoglobin, unfortunately, often tends to be a pre-cursor for cancer in my experience.

So now you are all a little bit more up to speed on my situation at the moment. But wait, it gets better!

When I cancelled my MDAnderson appointments and biopsies, I turned to my oncologist here at IU to help me by calling MDAnderson and figuring out the tests they were going to do and then setting them up for here. I guess that was a bad idea? Because the next time I went in for an appointment with him, it didn’t go well and I pretty much got scolded and lectured and told that I “needed to commit to either IU or MDAnderson” because he “couldn’t practice this way” EVEN THOUGH going into this I asked him if he was ok with working with MDAnderson. So you can imagine my incredible frustration while sitting there getting lectured and having everything turned on me, like I’m some kind of bad patient who frustrates doctors and can’t make up her mind which hospital to be treated at. (The lecture was much longer and in depth than this… I’m giving you the condensed version. I still think this doctor is a good man, but I will definitely not be working with him again.)

**sigh**

So now I’m here, doctor-less, trying to find a new doctor who will take me on. Being told at every turn that I’m a “complicated case” and “you need to get a diagnosis before we can help you” or “I’m a sarcoma doctor, you’ll need to see a GI doctor for that” and then “I’m a GI doctor, you’ll need to see a transplant doctor for that”… and many, many more things that just keep me stuck. Why don’t doctors in Indiana work together? Seriously. Have egos gotten so big that we can’t work together? And in the meantime, patients are not getting answers and whatever is going on in their body is doing damage… If this IS cancer, letting it grow probably isn’t the best option. But if this isn’t cancer, best guess is that it would be GVHD (graft v host disease—where my body is attacking my transplant and trying to reject it) which isn’t a great option either.

The doctor that we met with today at Community South did not impress my mom or I at all. He came in with his mind seemingly already made up. I had brought along my reports and CDs of scans from MDAnderson. He didn’t even look at them! He decided he needed his own scans to determine if anything was growing. Even though we had 6 months of proof right in front of him that it was. And before he had come in, I had given the nurse a laundry list of my symptoms that have been getting worse. Granted, slowly. But getting worse nonetheless. You know what he said? “Well your symptoms don’t seem to be getting worse…” ….uh…. I’m sorry, what? First, this was his first time ever seeing me, so what did he have to compare it to? Second, I feel like if he had even GLANCED at my list of symptoms he would never have said that. Not impressed. Not impressed at all. But I seem to be glutton for punishment, or I’m just incredibly desperate for a diagnosis, because I’m giving him another chance. I’m going through with the scans he has ordered (mostly because I do want to see the progress on my worrisome spots) and meeting with him one more time next week.

I do want to end this post on a good note though because I really, really don’t like feeling so frustrated and stressed out.

My mama bear went into fight mode and got lots of people on the phone and gave some a piece of her mind and hopefully kicked them into gear, then documented everything and is going to be the squeaky wheel for me. She also had a brilliant idea to call some of her good friends she’s made along this long, hard, cancer-filled journey. One of her friends lives in Cincinnati and is a nurse. She gave us some really awesome and hopeful news: Cincinnati Children’s Hospital had a unit within their pediatrics unit that sees adult patients like me! Those who were diagnosed with cancer as a pediatric and cancer has followed them all the way to adulthood. I cannot tell you how hopeful I am that they will take me under their wing. The thought of being treated like a pediatric just makes me want to cry happy tears of relief. I really, REALLY hope and pray that it will work out, though I do know that however it does end up working out, will be exactly how God intended it to, no matter how hard it may seem. He knows the trials I am required to go through to be molded and tailored into who I need to be and who He needs me to be.