it takes your breath away

September 28, 2012

I got my PET scan and my line out of my chest on Wednesday as planned. It went surprisingly well–I thought getting the line out would hurt more, but it wasn’t too bad.

Today was a pretty crucial day: the day we would get the results from the PET scan and discuss radiation…so we thought. To knock out some of my anxiousness about today, I was happy to have my film crew buddies visit this morning to work on the documentary today and to capture meeting with the doctor.

I thought we’d be talking a lot about the PET scan and radiation, but we actually only touched on that matter because apparently there is another issue at hand that is more of a priority. Although my fever went away from the virus a few weeks ago, my cough never did. But more importantly, I have been short of breath which I first dismissed as being “out of shape” since I haven’t be able to exercise much in isolation, and then I thought since I had sinus congestion due the fall weather, maybe I was just breathing out of my mouth more. But especially today, I could tell that getting physically fatigued this easily was abnormal.

As the doctors pressed their stethoscopes to my back and listened as I inhaled, I could tell they were concerned about what they were hearing. A problem that some stem cell transplant patients experience that doctors look for around Day 30, which I just had last week, is Pulmonary toxicity (damage to the lungs) resulting from a specific type of chemotherapy used during the SCT. After discussing my shortness of breath and listening to my lungs, my oncologist, Dr. Morgan, decided to go ahead and schedule a pulmonary function test (PFT) and a high-resolution CT scan this afternoon immediately following our appointment.

His sense of urgency to schedule those appointments told me that my little out-of-breath issue was a bigger deal than I initially thought. The PFT and the scan were to determine if my we were looking at an infection in the lungs that could be treated with antibiotics or inflammation of the lungs due to the chemo in which I would have to be treated with steroids. Dr. Morgan stated that he was hoping it was just an infection.

But he called us tonight and told us that after comparing my lung tests from before the SCT with the ones from today, there was strong evidence that the chemo had done some damage to my lung function. So in order to prevent further damage and keep the inflammation from turning into permanent scar tissue, I am starting my steroids tomorrow.

I know things are going to be ok and work out, I just really want to finish school next semester. These next few weeks of steroids kind of put a dent in my plans because treating my lung issue is further delaying the process of getting the radiation over with, if it is needed, in time to go back to college in January. I just want to be done with this, and not just for the next few months, but for good. Forever.

I think staying positive is relatively easy for me. It’s the staying patient that’s the hard part.

IN A NUTSHELL

  • Due to the toxicity of a chemo drug used during SCT, I have been experiencing shortness of breath resulting from what tests showed to be injury to my lung function/ inflammation in my lungs
  • I have to take steroids for a few weeks to get the inflammation under control and to prevent permanent damage
  • The question of radiation still remains to be discussed after my lung problem is resolved
  • I’m praying for healing, patience, and that this delay won’t be significant enough to keep me from returning to college next semester

 

 

baby steps

September 17, 2012

I can’t imagine how this all would have played out so far without prayer. Thank you for believing in the power of prayer and lifting up this time in my life to the only One who could do anything about it. That’s why I was not too surprised when against the odds and despite my immune system being in its most fragile state, I made it through the first 10 days without fever and engrafted perfectly (meaning the SCT worked just as it was supposed to).

After lying low for the first 15 days or so, I started to reintroduce my body back to the world a little bit at a time. While still wearing my mask, I got to get out of the apartment with my new immune system a little bit, go to the park and ate a Krispy Kreme doughnut as my first item of outside food since the SCT. My dad along with my sister and nephew who I hadn’t seen in a month came and visited me at the apartment. Then last week my oldest sister from VA came to visit and give my mom a few days off.

Everything was on point, until over the course over several days…I got allergies that turned into a cough, that turned into chest/back pain, that turned into fever. And the golden rule if you are a sick cancer patient at Vanderbilt is–if your fever reaches 100.4, call the doctor immediately. (It’s that little ‘.4’ that matters: 99.9- don’t care, 100.1- keep watching it, 100.3- still not there,  100.4- call right now!) So of course, what follows the “fever call” is going into the hospital with the expectation of staying at least a couple of days.

When I got there, my fever had reached 102.3, which is the highest its been in a few years. I ended up staying in the hospital to be monitored and receive IV antibiotics from last Wednesday to this Saturday afternoon. After chest x-rays/scans and deciding it wasn’t pneumonia, the doctors best guess is that it is some kind of virus. But in SCT patient’s case a little virus, can turn into a big deal.

I’m glad to be out of the hospital and hoping I’m well enough to stay out. (My goal is to get better before Friday so I can enjoy my birthday.) I’m still going in for clinic visits, but since Day 10 they have become less and less frequent. Before my fever last week, I had only been going in to the clinic twice a week.

It’s hard to believe that I have lost all of the immunities I spent my whole life building up since I was a baby. Every bug I fought off, every cookie I ate off of the ground, every gland that swelled up, every new germ I met, was all part of the process of carefully building up my immune system so that it could be strong enough to hold its own in my adult life. Now with a 4-week-old infant’s immune system in a 21-year-old’s body, I’m relying on a couple of pills I have to take for the next few months to do that until I can get my one-year vaccinations/immunizations.

I’m happy to be on Day 28 today. Day 30 is a major checkpoint after the stem cell transplant: I get a PET scan, my catheter taken out of my chest, and I get to stop clinic visits! The question of radiation still hangs over our heads, but we will know more about that after the PET scan.

IN A NUTSHELL

  • Better than most, I made it to Day 10 with no fever, and my immune system is right on track!
  • I got sick with fever last week and had to stay in the hospital a few days; I’m back at the apartment and feeling better, but still recovering
  • I will have a PET scan this week, so prayers for good results and about the radiation decision would be great