A long awaited update (2/15/11)

This last week has been a blur. Monday and Tuesday were for wrapping up loose ends and trying to see as many friends as possible. Wednesday, I worked my last shift at the shop. I can't tell you how much I already miss that place. My home away from home, my family. I miss everyone already.

On Thursday, bright and early, I was at the KU Med BMT (bone marrow transplant) Clinic. The first day of two days of evaluations. First were labs. Carlos, my friendly phlebotomist, grabbed a handful of 10 or 12 vials, a small plastic cup and a long swab. First try, he hit the invisible little vein in my left arm like a pro (poor guy didn't have much of a choice for placement. Right hand is blown, right arm is used up at this point.) Next, he informed me as to what the cup and swab were for. I'll go ahead and let you figure that one out on your own.

Next, I had my bone marrow biopsy. With a little help from Ativan and meditation, I layed calmly on my stomach as the nurse felt the back of my pelvic bone for the right spot. Then she numbed me with lidocaine. A lot of lidocaine. First the skin, then the deeper tissue, then the area around the bone. Once I was numbed up, she inserted a large needle into my pelvic bone. I was kept awake for this procedure so at this point, I could tell her if she was hitting a nerve. I would inform her of any discomfort, and she would stop and numb me up some more. (The numbing itself was an interesting sensation. Little taptaptaptaps on my bone. No real pain. It kind of tickled. Very strange.) Eventually, she had the needle deep enough into the bone to find a decent pocket of marrow. This is the part of the procedure where the pain can't generally be controlled. The feeling of having your bone marrow sucked out is like none other. It was painful, yes. But short lived. I had a lovely nurse holding my hand and looking into my eyes. She reminded me: "Breathe." I pushed out the breath I had just sucked in and slowly filled my lungs again. One more pull on her syringe, One more short bout of pain, and that part was over. They brought the tube to my face so I could see what bone marrow looked like. A dark, thick red. Pretty cool. Next was the actual biopsy. Another, larger needle was inserted, and slowly pushed into the bone. My nurse was wonderful and made sure that I felt no pain. It was so strange. Pressure. Lots of pressure. Eventually, she had gotten deep enough, and warned me that I might feel some pain as she pulled the core of bone out. I didn't feel a thing. I asked to see it, and they put the dish near my face. An inch long tube of bloody bone. All done.

Pressure was applied to the tiny incision above my rump, and then we were on our way to the next appointment, which was with my transplant coordinator, Gayle. We went over a tentative time line (tentative because we're waiting on the financial aspects to go through) and if my evaluations look good and my financial whatnots fall into place, I'll be back at the BMT this Thursday for my consent conference. It's my understanding that at this meeting I will sit down with all of my doctors and transplant team and go over everything that they'll be doing to me. The point is not only to make sure I understand the risks involved in what I'm about to go through, but it's the time for me to ask any and all questions I may have before the ball starts rolling. Before I sign the paperwork, we have to be sure that we're all on the same page with the whole "kill me and bring me back to life" thing.

The second day of evaluations, on Friday, was a bit more low-key. Chest x-ray, panoramic head x-ray, EKG, breathing tests. Also, I got this heart scan where they inject you with a drug that binds to your red blood cells, then they inject you with a radioactive isotope (if I had a quarter for each time I'd been injected with radioactivity...) which binds with the previous drug and allows the scanning machine to monitor your heart function by seeing perfectly the flow of blood through your heart. Super cool, really. Also, pretty much a painless test, if you're as used to IVs like I am. The scan took an hour, but I meditated and it felt like no time at all.


***
When I began writing this post yesterday, this was the part where I talk about starting the process that we would be starting next Friday. According to our tentative schedule, Friday is when the catheter would be surgically inserted into my chest and I would begin receiving injections to stimulate the white blood cell growth in my bone marrow. However, we are officially at a stand still. I was at SRS yesterday, and my case worker not only refused to see me to help me fill out the last of my paperwork, but seemed very annoyed that I had even shown up to speak with her. She informed me that I would have to make an appointment for later this week or next week. I informed her that I did not have that kind of time. That I need to start a life-saving procedure on Thursday. She didn't hear me. Or maybe she didn't care. She said there is no way to speed up the process, that it can take up to six weeks. She seemed so very annoyed that I would need to expedite the process to stay alive. I finally asked her if there was an expedited process for a person, such as myself, who had the crushing task of checking the box on the form that said "illness will result in death." She said there was no way to rush it. I put the phone back in it's cradle and held back tears. I could hear people talking to each other, see children running around, I smelled cigarette smoke but sat numb, stupefied. I felt like she had just handed me a death sentence. After everything that I had been through, it was because of one case worker that I could lose it all.

I was able to keep it together as I walked to the reception desk and asked for an envelope to drop my paperwork off in. The receptionist (who had been very kind and helpful, despite how hard her days must be, greeting the poverty stricken masses at SRS) asked me if we had gotten everything worked out. I lost it. I started sobbing right there. I left the envelope and walked out the door into blue skies. I sat in my car for a long time and let myself cry.

Gayle called this morning and told me that we can go ahead with the consent conference, but the rest of my treatment is on hold because of the financial issues. The doctor said that if we don't start the stem cell transplant in a week, I have to go back to St Francis for more chemo, so we don't lose what we've already gained. My financial coordinator, Belinda, said that she'll be speaking with the supervisor at SRS today. According to other sources, there is a way to expedite a case when the person is dying and needs treatment. We'll see. At this point, I'm just waiting. I'm trying to stay positive.

I'm getting scared. But I know that everything will happen the way it's supposed to. And goddamnit, I'm not giving up now. Not after fighting this hard for this long. I keep thinking of all of the people who are rallying behind me, supporting me. Donating their money, their time, praying, sending their positive thoughts. They give me faith in myself. They keep me fighting.


Thank you for fighting with me. This isn't over yet.