Friday, November 5, 2010

A Bitter Taste Left in My Mouth

I get the feeling that it's time for an update. It just gets hard to keep talking about this stuff all the time. There's always something going on, and I hate being asked about it. I know it's just because people care, but I don't want to be asked how I'm feeling anymore. I'm tired of explaining what's wrong; I'm even more tired of something always being wrong. Something always hurts, and it makes it hard to keep waking up every day and realizing all over again the reality in which I live. I like to think that I've stopped wishing it were a nightmare and that I'd suddenly awaken from it, but truthfully, I don't know if I'll ever stop wishing that.

I thought I'd seen all of the side effects these drugs had to offer. I've been nauseous, thrown up, been admitted to the hospital with fever, peed blood, had no energy, seen my blood counts drop and immune system depressed, had cramps, diarrhea, constipation, bone pain, muscle pain, headaches, and there have been many moments when it just hasn't seemed worth it to keep going.

The first two weeks of this new regimen were a piece of cake. The infusions were quick and painless, the pills didn't make me nauseous or give me diarrhea, though the combination thereof made me constipated, and the radiation had not yet begun to take its toll.

A few days before my birthday, about a week into October, I started to feel sores forming in my mouth. I had been told that the radiation might hurt my throat, and it was becoming difficult to swallow and eat. The sores made it painful to chew; I was already making the transition to soft foods, like soup and oatmeal.

The next three-plus weeks were an absolute nightmare. The sores got worse, and before I knew it my whole mouth and tongue, cheeks and gums were like one big sore. Volatile white growths formed a coating over almost everything I could see, and my throat was packed with mucus on which I gagged and threw up countless times. Of course, there was very little to throw up other than mucus and bile.

It hurt to speak, and I eventually lost my voice. It hurt to drink water, the sores on and around my tongue were so sensitive. I couldn't eat at all for a little more than a week, and when I could finally manage to drink anything, it was through a straw. I lost about 15lbs. over that time, and we're talking about weight that I didn't really have to spare in the first place.

The hair around the areas where the radiation was taking place fell out, which is, I'll admit, a minor detail, but I've just recently been able to cut down on the steady diet of pain killers which have managed to keep my life halfway bearable over the past month. Those, and, of course, my "personal nurse" girlfriend who, if I could, I would take everywhere with me. She's been like my angel; words cannot describe my gratefulness for having her as my own. I think she could make me smile in an earthquake.

It became apparent to my doctor that the combination of chemo and radiation was having an adverse affect on me, and I'm lucky we stopped the chemo when we did, because I can't begin to imagine how much worse things could have gotten. I mean, I had no idea they could ever be as bad as they were. The worst part was probably having to finish the second half of radiation; to show up every day in this excruciating pain, knowing that what I was about to do would only make it worse, but that I had no choice other than to stay the course. It was brutal.

At this point, I can drink without a straw. I can eat soft things, but the sores on my tongue require that it remain a very delicate process. I can swallow my food, though my throat hurts like it's been burnt to a crisp by laser beams...wait, that's exactly what has happened to it.

Aside from the pain and discomfort, I can't taste a thing. Even water tastes bitter, which seems somewhat fitting, but other than that disgusting bitterness, nothing else registers. I know what things are supposed to taste like, but everything is just bland. And, if you know me at all, I've always been an eater. I can't remember if I've said this before, but growing up, my grandparents always reveled in the fact that I was such a "good eater." I had no idea eating was something someone could be good at, but I was good at it. I've always loved to eat. Everyone who knows me knows that. Taking away my taste buds is like taking the voice from a singer...wait, that's exactly what just happened to me, too.

I regained my speaking voice a few days ago. Though shaky at first, I can finally rely on it to last through the day. It may still be a while before I sing.

Last year, I wrote about my birthday as a cause for celebration. We did celebrate again this year, though it didn't feel quite as festive due to the festering sores which, though uninvited, attended my dinner party nonetheless. My family festivities had to be postponed on my actual birthday, despite plans to have a nice dinner. My inability to chew, swallow, or taste anything kind of put a damper on those plans, and I'm still waiting for the latter to recover before rescheduling.

Earlier this week, having been two weeks removed from the end of radiation, we resumed chemo treatment. And as of yet, I have no way of knowing if this new plan is working. I can only hope so, because, if not, we're just giving this thing more time to grow.

I think the drugs are working, because when I was on them at first, I began to feel a little better. And, now that I'm back on them, albeit at a lower dose due to the catastrophe of last month, I feel good about it again. I can only hope that my hunch is correct, but I generally trust my hunches. Besides, even if these drugs aren't working, we'll move on to the next idea and find something that does work. Either way, I'm going to win.

I haven't wavered in that belief; I think it's the only way to approach it. It just gets hard to keep saying it in the face of such misfortune and pain. I had no idea such a reaction to that treatment was possible; there were many days I wanted to do nothing but cry, the pain was so intense. There were other days when I couldn't think of anything other than wanting to do a word that rhymes with cry; a word that I'll not mention, since the whole idea here is to avoid it.

The destination remains the same, as far as I'm concerned, though the journey has taken some unpredictable turns; the course has meandered. It's all part of the bigger story, I guess, because let's face it: this whole thing is a deviation from the path; a mistake that I can't correct.

I'll keep facing these obstacles, and I'll keep conquering them. I have no fear, and I believe in myself. None of that has changed. I will, however, never again presume to think that I've seen all of the ugliness these drugs can conjure. They seem to have a mind of their own, much like the enemy inside me. I just hope my side wins.


  1. I wish I could fix everything for you, but I'm at least glad I made you smile. Remember, you are invincible. I love you. You & me.

  2. Your side will win. You've been the best at everything you do and everything you put your mind to. school, sports, singing, family, being AWESOME!!!!! thinking of u always xoxoxo

  3. What type of cancer do you have, Jonathan ? Went through your archives, but you haven't mentioned it.

  4. Jonathan,

    My mum was diagnosed with Breast Cancer last month and we had our first round of Chemo two weeks ago. Her chemo treatment will be administered on a monthly basis. Five days after the Chemo, she woke up with a fever which we tried to medicate but she had the chills, and every bone in her body was paining. I was so scared, and I felt so helpless.

    It got worst because when I was trying to get her to eat in the afternoon, she had a seizure. Her body went limp, eyes rolled to the back of her head and her jaw clamped shut. My sister and I panicked , and we rushed her to the ER, where she spent the next five nights. Turns out the seizures were due to some sort of electrolyte imbalance. The doctor its extremely rare for somebody to have a seizure during chemo, so of course I am worried as hell now.

    Mum's getting better, but it's so tough on her. The Chemo is kicking the life out of her but she is so brave at the same time.

    I am not sure why I am telling you all this, but reading your blog is helping me so much. For one it's helped me stop questioning why this is happening to us. It's easier to accept and deal with. We have five more rounds of chemo with a surgery and radiation in between. I know we'll get by. I know you'll get by too. I'll keep you in my prayers.


  5. To Anonymous, I have Desmoplastic Small Round Cell Tumor.
    To M, it makes me happy to know I can be of any help in such a difficult time. The crazy thing is, no matter how hard the days are and how interminable they seem, each one goes by somehow, some way. The "Why?" questions will only drive you crazy, and you'll realize that there are no answers to be found. Chemo is a scary thing, and does some things to people I could never before imagine. Try to stay strong as best you can, both for yours and your mom's sake. Best wishes to your mom, I will add her to my prayers as well.

  6. Dear Jonathan,

    I keep coming back to your blog, hoping to find out how your treatment is proceeding. You haven't updated since December, so I thought I would write to check how you are doing.

    My mum's better, six sessions of chemo, and surgery done and we are now undergoing tests to see if she requires radiotherapy. Things are starting to look up. I want to thank you for writing back to me, it meant so much to me at the time.

    Please keep updating your blog, it serves as an immense source of strength for people struggling with the same situation. May God keep you safe, and bring you back to health soon.


  7. Oh sorry, I just realised that you have in fact been updating your blog. I had bookmarked it, and so it kept opening on the same page all these months. Well, I just read the latest post, and am so happy that you seem well and happy with your life.