Monday, October 24, 2011

Convoluted Mess

It has gotten to where I can't even keep the story straight anymore & it is my story. The doctors aren't keeping it straight, so please don't think I have any expectation that you should.

But, I do want to be honest about being scared & about needing encouragement &, so I want to try to catch you up if you are new to the story, or just aren't sure where things stand.

Here's a link to a health crisis recap I wrote in April of 2010, talking about stuff that started in August/September/October of 2009, the beginning of all this mess.

At that same time, I wrote two posts about a treatment I was about to try. Treatment Overview #1;
Treatment Overview #2

In those posts, I didn't tell you that the treatment involved infusing me with cells from a horse (ATG) & with another drug that is used in chemotherapy & given to people who have had organ transplants (Cyclosporine). On 5/23/10, I did say I was scared about it.

I had the treatment at the end of May.

On 6/10/10, unhappy about side effects (& in the midst of 'roid rage), I rant & rave at my doctor, "Your mother is a hamster."

On 7/12/10, Before a doctor's appointment, I wrote, "I am worried the doctor is going to tell me it is my fault that the treatment didn't work." That afternoon, I wrote about how I feel sorry for the doctors for having to deal with me. "Poor Dr. Lopez."

I was pretty quiet about things for awhile.

Then, in October of 2010, I shared with a new doctor that I was wondering if it was even a real thing. She said, that regardless of what other people saw or thought, it was important for me to know that what I am facing is real & that I do need an immune system & it is important for me to keep working towards making mine as strong as possible. (Chased by Trucks? - Health Update from 10/20/10)

In the meantime, I started having good numbers.

On 2/3/11, in preparation for an appointment with a specialist at UCSF, I shared this recap, in which, I wrote, "Since late September, my ANCs have consistently been above 1000. Three times, they were above 2300. (An ANC above 1500 is considered normal.) Most recently, my ANC was 2704!"

Since, things were looking great, at the time, the appointment with UCSF was pretty anti-climatic. Net was, "It appears the treatment has worked." On 2/7/11, I wrote, "Nothing Earth-Shattering from UCSF."

On 3/30/11, I went to back to see the surgeon who'd operated on me. He'd wanted to do a one-year, post-op follow-up. It ended up being about a year & a half after the surgery before I saw him. He wanted me to get a CT Scan to make sure everything was OK. We're still paying for that CT Scan but it did say everything looked OK. Here's what I wrote about something he said during that visit. "It wasn't a home run but we're still winning."

Because things had been looking so good in February, they didn't even check my blood for three months. When they checked it, at the end of May, it was much lower. "For those keeping score. ANC of 1100 called, Good. Fine."

As planned, the doctor allowed me to stop taking a medication I'd been on for a year at the end of May. When we checked my numbers at the end of June 2011, they'd plummeted. "Well, Crap. (ANC of 200)" On 6/23/11, I wrote, "This isn't new but apparently it isn't over either."

At that time, they asked me to try taking a medication I'd taken in the past w/varied results (Neupogen). It was supposed to increase my number of Neutrophils. We got my ANC up to 700 but that didn't seem like much of a boost.

On 7/11/11, I wrote, "They want me to try taking Cyclosporine again." This was the medication I'd been on for a year. I'd been taking it when I had good numbers for eight months but it was part of a treatment involving other medications. My doctor didn't want to put me back in the hospital or give me those other medications if we didn't have to.

I took the medication (Cyclosporine) for several weeks but it didn't seem to be able to work any magic by itself. In July, my counts ranged from 100-300.

Despite these scary numbers, the doctor had started saying I was, "fine." He said I wasn't going to get something I couldn't fight.

In August, I said, if I was fine, could they just leave me alone, please? They said, "OK."

Then, in September, I got sick. I didn't even really realize I was sick until, suddenly, I was very sick & calling the doctors for help. On 10/9, they put me on antibiotics.

On, 10/10/11, they checked my ANC & this time, it was zero. I'd never hit zero before.

They put me back on the medication they hoped would boost my cells (Neupogen). After a couple of shots, on 10/14/11, my ANC was still zero.

A few shots later & they checked again. When he got the results, on 10/17/11, my doctor told me I had one Neutrophil.

Today, I got the paperwork from that day & see that the one he was referring to was the fact that only one percent of my white blood cells were Neutrophils. (Not great considering 50-75% of my WBCs are supposed to be Neutrophils but, my ANC was actually 26, a bit better than zero or one.)

On 10/19/11, I was invited to see a doctor who specializes in Neutropenia. I have an appointment with him on 12/1, in Seattle.

This morning, after week more of shots, they checked my levels again. This time, the doctor said, "WBC is 2.1 (it should be 4-11) with 100 Neutrophils (they should be 1500). You have also developed anemia, which is unexplained. It is time for another bone marrow biopsy. This can be done by me, or the doctor in Seattle. Let me know what works for you."

I wrote,
Today, the hematologist said, "It is time for another bone marrow biopsy."
That'll be #3.

I know this is a convoluted mess but it is the best I could do, right now. I hope it helps explain things to those of you who are new & brings those of you who have been following along up to speed. As always, thanks for caring.

Gonna go play w/Sam now.



Laura Edwards said...

Hi Mary,

YIKES - of course you're scared, anybody would be and I'm sending you a huge heaping hug full of encouragement and the clarity/insight to know what's best for your healing process.

You are courageous, Mary, and so full of life and heartfulness. I just know that you'll get through this again and be even better-- Bionic Mary!!! :)

Wishing you a speedy and perfect recovery,
-Laura edwards

Mhris said...

Well, poop! I concur! I'm sorry things are getting scary and annoying. I am here to listen or hold your hand (or both) whenever you need. You are an amazing, strong, smart, magical woman. I know you will come through this latest bump in the road with flying colors.

Btw, I was just telling Rod I wanted to go to Seattle (when we watched the KEXP doc). So, if you want some company, I know there are some amazing vegan restaurants up there and I'm always game for new food! ;) xoxoxoxo!!

Cathy said...

Mary, not a convoluted mess but a well organized chronology. Thank you for writing it. I'm sorry you're sick. I hope you'll like the doctor in Seattle.

Pablo said...

I will send positive vibes your way!

Anonymous said...

Yikes Mary, sorry to hear about BMB#3. They hurt like heck, I know cause I had a painful experience too.
This blood stuff sucks big eggs. I can only imagine what thoughts are racing through your head and yet, what can be done about it in the moment?
Wishing you well and soon.