Category Archives: Blog

In the process of checking into Emory hospital after a long wait–as per usual–for them to clear out a bed, find me a room, generally get all the paperwork squared away.

Tonight’s med schedule is a two-hour infusion of carmustine. Of note, carmustine needs to be administered via an 8% alcohol solution. Yep, I’m getting booze. By IV.

Some of the side effects include a flushed, red face and sense of warmth. Ya think?? I haven’t had alcohol in over a year, and even when I was having the occasional cocktail or glass of wine, I had no alcohol tolerance.

Gonna be a party in my hospital room tonight.

Tuesday I go into the hospital for my stem cell transplant.

I’ve been battling a low-grade fever for the last couple weeks, brought on, I’m pretty sure, by my stupid human suit freaking out over five weeks and 45 Gy of radiation. I’m taking prednisone now, which is breaking the fever, but it keeps yo-yoing back.

My oncologist said that going into the transplant procedure brimmed up on steroids is fine, but going in with a fever is less so. But we can’t just wait for this flare-up to de-flare, either. Yeah, it’s stressing me out.

Trying to focus on day-by-day next steps instead:

• Every morning this weekend and Monday, we go into the Winship infusion center for them to give me three, two-hour-long pre-chemo infusions of Kepivance, a recombinant keratinocyte growth factor, which will help ease some of the worst side effects of the transplant procedure. Unfortunately, the Kepivance itself is going to be fairly unpleasant, as it will stimulate the growth of the cells lining my mouth and GI tract, making everything…just yuck.

  Of course, I was just beginning to get hints of my sense of taste back. This will utterly wipe it out again. Food and I are not going to be getting along for a while longer.

• Tuesday, they’ll start me on BEAM, a high-dose chemotherapy treatment which will be administered over the course of seven days. It will utterly wipe out my immune system and, hopefully, the cancer. It will also raze all the new hair growth I was starting to see these last few weeks. Sigh. I miss my hair.
• They’ll give me another three days of Kepivance at the end of the chemo.
• I’ll receive an infusion of my own, previously harvested stem cells on day 7 to rescue me from what BEAM will be doing to me. Essentially, my life in a bag, pumped back in.
• Then comes the fun as I endure the brutal side effects of BEAM while waiting for my body to reboot.

One week of chemo, two weeks of recovery, and then, hopefully, they’ll release me from the hospital, weak as a kitten, severely immunocompromised, but cancer-free.

That is the plan.

Four more days of radiation, and it can’t be over soon enough.

New side effects: nosebleeds and fever. The fever is low-grade, probably just my stupid human suit being stupid, as it is wont to do when it gets stressed. The nosebleeds are not unexpected but are getting worse. The doctor said we pretty much have to ride them out; they’ll pass once we stop barraging my nasopharynx and sinus regions with radiation and my body gets a chance to heal.

Also getting weaker–dizzy and lightheaded more often than not when I stand up. Think that’s the fatigue hitting harder. Mentioned it to my radiation oncologist last week, and he didn’t think we needed to do labwork to check whether I was anemic, as radiation shouldn’t be hitting my counts like that. But fatigue, yeah, fatigue we has it.

Food continues to be a trial. My mouth and throat hurt enough that I’m taking Percocet now to get me by. Can’t taste anything, of course. Most of my meals are liquid these days–protein shakes and nutritional supplements, sometimes mixed with ice cream to boost the calories. Also some rice porridge with an egg and blended vegetables stirred in. I can still handle a bit of fresh fruit, but anything bread or pasta-related is too dry for me to swallow.

Four more days. Then I can start healing…and getting ready to go into the hospital for my stem cell transplant.

Today will mark my 18th radiation treatment. I’m slated to have 25 total (for 45 Gy of radiation in all) so we’ll call this “the homestretch.” Squinting hard to see the light at the end of the tunnel.

The fatigue has gotten worse, as have the food issues. I can’t taste anything now except for a pervasive metallic chemical tang that permeates my mouth whether I’m eating something or not. My mouth is so raw and sensitive, as soon as one patch heals, another takes its place. I guess I should be glad I’m healing at all, but I’m not really in a glass half full mindset these days. I’m getting meals down by sheer willpower, chewing and swallowing because I have to, although I want to gag at every mouthful. I’m trying to keep from losing any more weight by hitting the liquid supplements harder, as my radiation oncologist and his staff have advised.

Yesterday marked a change in treatment radius. The amount of radiation (the fraction) they’re blasting me with on a daily basis remains the same, but the location is now smaller. Before, they were irradiating the complete tumor zone plus a two-centimeter perimeter around it. Now, they’re just zapping the tumor region, so it’s a slightly more concentrated, more focused delivery.

I noticed yesterday a scent perception change during my treatment. Before, I could always smell when the radiation started. It’s a burnt ozone/rancid chemical scent–very distinctive and quite sharp–that I always got for a few moments just as the radiation began. Yesterday, I still got that smell, but it was much fainter, more like a passing whiff than the usual overwhelming barrage. Didn’t occur to me that I was smelling the radiation because of where they were irradiating. I thought it was just the smell of the machinery as it went on. Seems instead that a two-centimeter shift in location changes how the radiation hits my olfactory receptors.

I’ve also finally gotten a date for my stem cell transplant. I’m slated to go into the hospital on the 29th. A part of me is going, “Yay, we’ve finally got a timeline for the main event!” but the rest of me is going, “I’m already at the frayed bits of my endurance, and the stem cell transplant will be even more brutal than what I’ve already gone through. Wah!”

I just want all this behind me already.

Blue Cross Blue Shield is giving us the runaround.

First, they won’t speak to Matthew without a form from me giving my consent for him to discuss my medical/insurance situation with them. Okay, fine. HIPAA privacy laws, whatever. I need Matthew to represent me because I work during the day during their business hours, it hurts to talk and I’m exhausted from radiation side effects, and I simply can’t spend hours on the phone on hold waiting to argue with a BCBS representative. So form duly requested, received, filled out, and sent in last week.

Of course, now they can’t find it.

They also can’t find the reference number for my radiation oncologist’s peer-to-peer discussion with their oncology representative, without which our appeal can’t move forward (it took an hour on hold for us to ferret this information out). Now my doctor needs to have another peer-to-peer meeting with their doctor because BCBS lost paperwork.

Nor, apparently, can they find anyone who will take responsibility for my case. They keep forwarding us from person to person, none of whom knows what’s going on or can effect any movement, take action, or make a decision regarding our appeal.

So frustrated. So furious.