Zombie Mouth

The week wore on. They actually did let me sleep on occasion and the night sweats were epic. 3 bed changes a night- of sweat. I feel very fortunate that I was not in pain, but the sweating was ridiculous. Completely drenched head, could wring out puddles of sweat out my hair. How could I have ignored this symptom for the past two weeks? Again, denial!

But essentially I stayed the same.

Bone marrow biopsy- prelimary results…. NORMAL. No Leukemia. Robust response to an unknown trigger. Cause for celebration for sure- so it HAD to be an infection, right? Final results pending.

Until my counts dropped again.  Everyday I am thinking, this is the day I will rebound, things will improve. And then I didn’t… but at least no cancer. DO SOMETHING. I really had no medications- Because there was “nothing” to treat. They were still at a loss at what to do. So at this point, I looked at one of the doctors and said something along the lines of, cancer is probably going to take a little while to kill me- sepsis can do it in hours. I do not want to be septic. Brief explanation here- sepsis is a massive infection, usually bacterial or fungal (but I suppose you could become septic from something like Ebola, so a virus can do it too). Your blood vessels clamp down, you are not circulating blood and the infection is taking over. And as someone who works with resistant bacteria daily I knew that this could be a possibility- and I DID NOT want to be septic. (Resistant bacteria- a bacteria that has become immune to the antibiotics we currently have available). I felt that they had stopped taking into account HOW SICK I WAS on paper, but that I was a “stable” patient.  I was “healthy.” JUST DO SOMETHING!

So they finally started antibiotics, antifungals and antivirals.

My fever stopped, within 48 hours.

But more and more results came in. Negative. There wasn’t an infection that they had found. But I was responding to therapy. Clinically, that can be really important. You’ve ruled this or that out, go back to common diseases occur commonly….

BUT- cancer can also be made more complicated by an opportunistic infection (an infection that takes the opportunity to make you sick while your immune system is down).

So each day was filled with uncertainty. Just when a test would be “conclusive” about something, another test would be inconclusive for something else.

“You have cancer, no you don’t, yes you do, no you don’t….” It was awful. Because this was not your run of the mill stage one cancer here. This was aggressive and widespread. This was bad. I think that one of my husband’s favorite questions for the docs was,” how many times has this ever happened to you? Someone in the hospital so many days without a diagnosis?” It was apparent that this just didn’t happen.

And as the patient- as me- one of my biggest fears (I know….) is that I may have a disease named after me. Who fears that? I do. My husband- “they usually name it after the doctor who discovers it unless you’re famous” I love him and he keeps it real and I wouldn’t have it any other way.

My blood counts just would not stabilize. I continued to have pancytopenia (this is the fancy medical term for low WBC, RBC and platelet and I will now start using it regularly). So what to do, what to do…. Test some more! But I would get to go home. “Let’s try to get a lung biopsy in before you leave.” (Yes, please). So I was transfused platelets (remember the things that make your blood clot?) and sent to radiology.

You have to realize that every patient is different and every doctor is different. And we are not created equally (later post). The particular doctor that was to biopsy me was seasoned and personable. But he did not regularly use sedation. Now, I hope I have not painted myself as a “Nervous Nellie…” I’m ok. I can hold still, I know the importance of getting a good sample, making sure the needle goes in the right place (that is important when it is going into a lung- you don’t want to “pop” the lung), I am an adult. I can do this. What I can’t do- control my blood counts, control where the needle is going (that is the doctor using an xray machine), control if there is a blood vessel that might bleed and bleed and bleed. Have you seen my story? Do you know what is coming? I started coughing up a profuse amount of blood, like horror movie amounts. I could not hold still. And I was worried. The nurses, the doctor, everyone was great (ok, one nurse may have gotten a little nervous- you are bound to have an off day when you see a real live zombie mouth for the first time). It was one of the most traumatic things I have ever been through. And just to keep you in suspense- before I got my diagnosis, I will have 3 more lung biopsies!.

Preliminary pathology- not cancer. Histiocytes (a white blood warrior cell) Nothing too remarkable. Except those histiocytes- lots of them- probably responding to the infection they  yet had to find.

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