On June 2, I had nine biopsies of some enlarged lymph nodes in my mesentery (that's the "double layer of peritoneum that suspends the jejunum and ileum from the posterior wall of the abdomen," which, I'm certain, gives you a clear picture). I don't think my jejunum and ileum are in danger, but my peritoneum was less lucky. I have lymphoma.
I have lymphoma. I have lymphoma. Lymphoma. Lymmmmm-phoooooo-muhhhhhhh. I say that over and over again. It's low-grade, B-cell lymphoma, which means that it originates in the bone and will grow slowly, and I'll go into remission, but it won't die. It probably won't kill me, either. Yet when I say lymphoma, it still sounds like cancer.
Cancer should be a beautiful thing. It rhymes with Dancer and Prancer—happy reindeer. It rhymes with romancer. My dog, Chancer. And though it also rhymes with answer, I have nothing but questions.
When I was first diagnosed, I did not look on the Internet for information except for the one time I saw that the median survival was ten to fifteen years. I've spoken about it on Facebook. I mention it in conversation. I use it, sometimes, to explain my tears over simple things like getting an IV stick before a colonoscopy. And everywhere I say it, someone tells me his uncle or her grandmother—or, as in the case of the nurse nervously spilling my blood in her second attempt at an IV stick, her daughter—has lymphoma, and he/she has never been treated or is ninety-five or is in remission or is under the care of my own doctor.
Today, I am awaiting the results of my endoscopy/colonoscopy biopsies. Next week, I will have my bone marrow tested. Because I have a stomachache, I will need some sort of treatment, most likely with an antigen—a four-hour weekly infusion. It is not supposed to have side effects, according to my doctor, but it does. (He also says the bone marrow test doesn't hurt, but having Novocaine injected on either side of your spine, then more into your bones, then having the marrow extracted is likely more unpleasant than most things I can think of. So I try not to think of it.)
I am grateful to have had some good care at Good Samaritan Hospital, where I went not for the primary symptom of a stomachache but for a prescription for Nitroglycerine, in case I ever get another episode of the family curse: a spastic esophagus. Before I was to leave the hospital that day in March, the doctor examined me and feared I had appendicitis. I was in tears because I was just about to take my daughter to see Bob Schneider in concert for her first time. The results—nothing wrong in my organs but enlarged lymph nodes that would need to be rescanned in six weeks—weren't particularly scary. Food poisoning or a virus seemed reasonable; lymphoma did not. Nearly all of these discoveries of lymphoma (lymmmm-phooooo-muhhhhhh, lymphoma, cancer) are accidental.
I am also grateful to Dr. Marc Gertner for taking such excellent care of me, for leading me to believe I have a good attitude, for treating me like he would a person he cares about. And to my family for their kindness and patience and money (insurance is denying everything, naturally). And a special thank you to my friends for thinking of me, checking up on me, for letting me cry and vent and be selfish. Thanks for all the cards and messages and homemade foods and offers of financial aid in the form of rock benefits and all the other niceties that somehow seem to rain down on me when I need them most.
But I am uncomfortable needing them. That has made this month even more of a challenge—as have a new car payment and job interviews. Still, I'm plugging away, getting my work done, writing for Baltimore Fishbowl, watching my daughter's musical talent explode. Songs, new and old, are still being sung. Photographs are still being taken. The beer is still being drunk. This life is still being lived.
*That's my girl on drums!
11 caws:
Wow, challenging indeed. I wish I had something profound to say. I don't. I wish I knew what to say. But I don't. I hope it helps to know that someone is reading and cares. - I am and do.
My thoughts are with you Leslie. I knew something was up, just didn't know what... I dont Facebook, but there were hints elsewhere?
I know it's scary, but you are strong in so many ways. And one of which is to say it, when you don't feel that way, if that makes sense...because you don't have to always feel that way.
I know you have a ton of well wishers, and that's a lot of power.
Take care - B.
XOXOXOXOXOXOXOXOXOXOXOXO.
Yeah. I don't have anything profound to offer either, but I definitely care. You are strong. You seem to live life more fully than most people I know, and it doesn't look like you're changing that. I'm glad.
Oh no! I didn't know you were sick. :( I'm so sorry!
(I did know you had a new car though and a new doggie)
Laura <3
Leslie, I am terribly sorry to hear what you are going through. My thoughts are with you and your family.
~Wendy
Wow, Les, I'm bummed to hear this. It really sucks and I can't imagine what you must be feeling. But I do know that you are strong and vibrant and surrounded by friends, near and far, who love and support you. I will keep you in my thoughts and pleas to the higher power and send good vibes your way.
I think you should name your lymphoma ... give him/her a complete personality and relate to it as you would someone 'real' in your day-to-day life. It might be a good avenue for releasing your anger, pain, frustration, worry and fear. I've always said that if I ever get something dreadful that I will make it something separate from me, something that is trying to overtake me. And I will fight that bitch till death do us part (HER death)! Keep up the good fight! You are tough ... you got this.
Aw, damn.
I have no doubt you will handle this with your usual grace and courage, but I hate that you have to.
Leslie,
Sometimes it just seems to rain shit all over us. This news is hard. I know. My DH is fighting cancer for the second time. Somedays, it sucks worst than others.
All I can say is be good to yourself. Give yourself permission to be sad, be angry, be bitter. Also give yourself permission to be happy, to put yourself first and watch your flowers grow. In short, just live. Get through one minute then the next. Whatever it takes to live as you live, then do. Live consciously...and keep doing it.
You are in my thoughts.
Wow. Looking forward to reading more of your blog. Yes, there is enormous injustice in a pretty word like cancer representing something so toxic and invasive and full of fear.
Be well. And meditate on love... often and loudly.
xoxo, the wellness bitch
http://www.thewellnessbitch.com
Leslie, Am behind on your blog as my email subscription has stopped working, I guess, and so I visited. I am sorry for this diagnosis! But from what little I know, is sounds like you might have gotten lucky with the type of lymphoma. Anyway, you are a fighter and have a great attitude, so I know you will be fine! At least, I am among many who hope so . . .
Leslie, Am behind on your blog as my email subscription has stopped working, I guess, and so I visited. I am sorry for this diagnosis! But from what little I know, is sounds like you might have gotten lucky with the type of lymphoma. Anyway, you are a fighter and have a great attitude, so I know you will be fine! At least, I am among many who hope so . . .
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