The journey begins (2/23/11)

Allow me to get you up to date.

On Monday, I got the call from SRS that my Medicaid had gone through. Happy dance! By Tuesday, Gayle (my awesome transplant coordinator) had me on the schedule starting Thursday to begin the transplant process.

That gets us to today. Mom and I drove up to Kansas City and got settled into the Hope Lodge (a free hotel for cancer patients who are coming in from out of town for their treatments) and I just got my first Neupogen injection an hour ago. They give it to you in your belly here (as opposed to the back of the arm like they do in Topeka.) That was different. Burny. I'm trying to stay positive, centered, calm... but there is a part of me anticipating that pain again. I just have to hope for the best, prepare for the worst, and remember that all of this pain and sickness is temporary. Breathe in, breathe out.

So, this brings us to the next step- Tomorrow at 10 am is my surgery to have the Trifusion Catheter placed in my chest. Then another Neupogen injection. Saturday, another injection, and Sunday, another. By this point I should be producing enough white blood cells to choke a goat. On Monday I will begin the part where they hook me up to a dialysis sort of machine where they draw out my blood, centrifuge it, take the stem cells and give me back the rest. They say this can take up to three days. It is my aim to get it done on the first day. Like a champ.

After we collect enough stem cells, they freeze the goods and we get to go back to Topeka until Monday, March 7th. On that day (day "-7" in transplant-speak) I will begin my highest dose chemo yet. The immune system killer. I will get this for 5 days (Days "-6" through "-2") rest one day (Day "-1",) and then on day 7, (or day "0" for you cats who are now hip to the lingo) I will be given back my stem cells through my catheter, directly to my heart. (Fun fact: I will smell very strongly of garlic for 24 hours after this part. Long story short, it's because of a drug they put in the stem cell slushy to keep it from self-destructing.)

After that, we wait for "engraftment." Basically waiting to see if the stem cells took. And they will, because I'm a champ like that. Anyhoo, I'll go into greater detail about the whole "living without an immune system" stuff when we get closer to it. It's 100 days of strict rules, special dietary precautions, and (for a while) daily hospital visits. Scary stuff.

How am I? Scared but calm. Sad to see the farce of normality of the last few weeks come to an end. I miss my friends already, miss the shop, miss the freedom to just drive around on sunny days to no where in particular. Everything feels foreign. The Hope Lodge is very, very nice. Lots of sunny rooms and comfy looking chairs. I should look at this as a retreat. I have a lot of thinking to do, and I think this is the perfect place.

Think happy thoughts for me tomorrow. Much love, folks.

tick tock

Waiting for the call. Ticking away hours and minutes in the back of my head while keeping myself busy with back-to-back social engagements, good books, and that "Angry Birds" game on my iphone. Seriously, I've never done crack, but I'm pretty sure that it's like playing Angry Birds. So addictive.

Since today is a holiday, I'm supposed to hear from my Financial Coordinator, Belinda, tomorrow. It should be the call that gives us the green light for the transplant. I've never wanted something so horrible to happen to me so badly.

Please please please approve my paperwork.




I'll let you fine folks know as soon as I do.

Love above all (2/16/11)

Due to an overwhelming outpouring of support from my friends and family who selflessly and relentlessly advocated on my behalf, my financial situation is now moving along rapidly.

I'm not sure how much I should say about it, but let's just say I spoke to two very kind gentlemen on the phone this afternoon who had been alerted to my issues at SRS and assured me that due to the life-threatening nature of my condition, that they would do everything in their power to help my situation be resolved as quickly as possible. The case is now being watched closely. I will be getting the transplant very soon. I'm so happy I could cry. I feel overwhelmed by love. I can't stop smiling.

I owe a huge thank you to all of my advocates. The warriors battling beside me. Your kindness humbles and amazes me. I'm not sure what I did to deserve your love and support, but I promise I'll never stop.

You have all saved my life today. And for that, I am eternally thankful.

I promise that I'll pay forward this kindness.


Thank you.

Echoes (2/16/11)

I had the honor of being in attendance at Sarah Madl's funeral today. It was a beautiful catholic mass. She passed away earlier this week after her colorectal cancer spread to other areas. She fought hard, without self-pity or dramatic flair. "Hot as a pistol/ but cool inside." She was 22.

Jon, Micah, Sarah. They're with me. Nothing is created or destroyed. We are all made of the same stuff. Stardust.



You know, as disconnected as I sometimes feel throughout this process, I have never felt more connected than I do now. Everything petty is slowly sloughing away. The duality of human existence, the us versus them, the good versus bad, right and wrong; these concepts we've given names to that we use to label and define things. It's all falling away. How could I have seen this any other way?

The fact is that I couldn't have. This is the path I'm on because it is the path I'm supposed to be on. If there was a reason, it wouldn't matter. Not to me, at least.

As painful as it is in so many ways, I am honored to walk this path. So many opportunities await.

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.

The PET scan results are in...

I had my scan this morning to see how I had responded to the ICE chemo.

The chemo worked. Compared to the pre-treatment scan from a month ago, almost nothing lit up in the one from this morning. The tumors where virtually gone. Melted away. This sort of response to treatment is a very good indicator that I will respond just as well to the transplant.

I left the hospital with tears streaming down my cheeks and a huge grin across my face. I'm so happy. This is such good news. What a beautiful day.

The next step is to start scheduling appointments for the evaluations, paperwork, consults and the consent conference. Then, the catheter will be placed, and they'll start pumping me full of Neupogen to make my white blood cell count skyrocket. The beginning of the transplant process.

So let's do this. Destroy me, and I promise I will come back stronger. Everyone, my friends, my family, my clientele from work, even complete strangers, have shown me so much love that I have nothing but hope in my heart. They make me ready to fight again. They remind me just how many people are rooting for me. Thinking of them will get me through the pain and sickness and darkness and give me the strength I need to get through this.

Sometimes I feel like I'm the luckiest girl in the world. I feel like I'm understanding things that I never could have grasped if this whole experience hadn't happened.



The road's about to get very rough. But I think I'm as ready as I'll ever be.

I'll just take it one day at a time.

Breathe in, breathe out. Repeat.

Zen meditation helped so much. I need to start doing that every week, every day. I feel much better already. We spoke of mindfulness. We meditated. We chanted the Heart Sutra among other things. That sutra in particular always brings me such peace. Everything about that hour this evening felt right.


All things are merely concepts. We create our world.

Something to think about.



...gate gate paragate...