It's the last week of September 2007 now, which means it's been five years since I was diagnosed with
Non-Hodgkin Lymphoma, or NHL. That's a weird thing to think about. It's been some serious downs, and some definite ups, and some things I didn't think I would make it through. But I'm here.
HOW IT ALL STARTEDOnly five years (and a lifetime) ago I got "sick" - let's just say "blood" and "stool" and "more than 2 weeks" and leave it at that. I almost didn't even mention it to the doc, I was so embarrassed. I was raised not to discuss such things. But I said it. Just to be safe, the doc thought it was best if I got a
colonoscopy. "I know you're only 29, and you don't get a lot of fiber in your diet, but let's just be sure." So for opening my big mouth, I got to get a colonoscopy. (Which you absolutely MUST do if even the tiniest thing seems wrong!) But I'll be honest with you - god does it suck. The stuff they give you to drink! It's so salty, and there's NOTHING that can cover up that taste. OMG it makes you want to gag. In comparison, having a camera on a snake tube stuck up your butt is NOTHING. When it was over, I got to see weird pictures of my colon, where it was just solid bumps. They took some out for a biopsy "just to be safe". And then began the wait.
THE CALLIn these five years, so much has happened, so much has changed, and my memory definitely isn't what it used to be. But I can still remember the doctor calling to tell me my biopsy results. In my mind, I can still see the notepad I wrote what he was saying down on, the scratchy feel of the paper under my hand. The afternoon light coming through the windows next to my cube. I wasn't sure what he was saying, but I distinctly heard "-oma" in there. "Multiple lymphomatous polyposis? What does that mean?" I asked. He replied, like a teacher to a kindergartener, "Well...
polyposis means it's polyps,
multiple means there are many, and
lymphomatous... well, that's cancer of your lymph system, basically your immune system. So it looks like you have lymphoma which has advanced to the stage of causing many polyps in your colon. But MLP only happens to old men..." Apparently the fact that a 29 year old female had it was very puzzling to him, and the concept was much more intriguing than talking to the actual 29 year old female on the phone. He told me I needed to see an oncologist quickly, and he'd recommend a very good one. He gave me the number, and the doctor's name, and we were done.
I sat there for a moment, panicked. I didn't really know what all that meant. I had to call back to get some clarification once I could get my thoughts together, and he wasn't too happy about that either. I spent every spare moment online, looking up definitions and treatments, and terrifying myself with survival rates; since MLP is mainly an old man disease, the survival rates usually hover around 5 years. Five years!!! I was going to be dead in five years!
I went into all kinds of shocking feelings. I wanted to be left alone - I wasn't even going to tell my family; I'd handle this on my own. And then I felt I couldn't do it on my own, so I had to tell some people, but one of the women I worked with at the time had just been diagnosed with breast cancer and was about to start chemo, and I was afraid that if I told anyone I'd be "stealing her thunder" - I was thinking the craziest thoughts!
THE ONCOLOGISTIt was going to be over a month before I could get into the oncologist, so the colonoscopy doc called in a favor to get me in immediately. I got an appointment right away to see Dr. K, the best oncologist/hematologist at the
Cancer Therapy Research Center, or CTRC. I think the appointment was at 1pm, and we were in the waiting room for over 3 hours. By the time I was seen, I was beyond frazzled. But the doc was very nice, and explained everything to me. Luckily I had my cousin, Erinn, and a friend, Mike, there to take notes because afterwards, I remembered nothing. He explained Non-Hodgkin Lymphoma, and the treatment options, and that I'd need MRI's and CT scans to see which other areas were involved. ("Other areas?" I thought.) Everything I'd read said you
must get a second opinion, and I'd decided on MD Anderson in Houston, who had said all they needed was a bone marrow sample and the scan results. Simple.
It had gotten dark, and there were only a few lab techs and nurses left to help with the bone marrow aspiration. They laid me on my stomach and gave me Versed, which is a "twilight drug". You're not totally out, but you're not totally there either. They had to give me several doses because I could still feel pin pricks on my pelvis. When she saw the huge needle and syringe, Erinn had to leave because she was going to pass out. As the drug kicked in, I felt it was vitally important to tell Mike that we HAD to see
Mortal Kombat in the immediate future. I couldn't get the theme song to it out of my head (you have to admit - it's a catchy tune).
And then the procedure began. Immediately I began to whimper and wail that it really hurt. Dr. K reached around in front of me to show me the ballpoint pen in his hand and say, "I'm only marking the spots where we're going to put the needle in." I didn't quite believe him. But he was right, because once the needle started going in, now
that hurt like hell. Tears were streaming down my face, and I was involuntarily moaning louder and louder. They got the bone marrow for the test, and I got to feel like someone had kicked me with stiletto heels atop each butt cheek for a couple of days.
THE CANCERAll the test results came in, even from MD Anderson, and the final verdict was Stage IV, indolent (low-grade), B-cell, follicular Non-Hodgkin Lymphoma. Stage IV means that the cancer:
- is found in at least one organ or tissue other than the lymph nodes and may be in nearby lymph nodes; and that
- it affects lymph nodes or organs in all 4 quadrants (right and left side, above and below the diaphragm).
The lymphoma was in my colon, a chain of lymph nodes up the center of my body, my adenoids/sinuses, and my bone marrow.
THE CHEMOThe treatment plan would be 4 rounds of chemo, each a month apart; each round would be 3 days of chemo, 6-8 hours each day. I would be on a combination of
Cytoxan,
Fludara, and
Rituxan. Some people are allergic to Rituxan, so we'd have to keep a close watch.
And then began the real roller-coaster ride. Everything became a blur. I think I was told the diagnosis and treatment plan on a Thursday, and Dr. K had me in for surgery to get a medi-port installed the next morning so it would have healed enough that we could start chemo that next Monday. I needed a medi-port for injection of the chemo because my veins are so delicate that they roll and are impossible to find; if you
can find them they burst; and the chemo drugs are so damaging they'd ruin my veins even further. A medi-port is a little device that has a rubbery top that reseals (like the top of the test tubes they draw blood into) which they put under the skin in your chest and the underside sticks into a major artery. I think they suture it together. It was all black-and-blue and nasty looking when I came out. But I had bigger things to worry about.
My parents were coming in for my first round of chemo. I spent all my energy setting up my "chemo bag" so I wouldn't be bored. Books to read, coloring books, colored pencils and blank sketchbooks, my mp3 player, my laptop. The amazing people I worked with had organized a volunteer system of bringing us dinner, and later, volunteers to stay with me overnight for every round of chemo. You name it, it was covered. I was prepared. I went to bed early to get plenty of rest the night before my first day of chemo.
And then whammo! I woke up with the worst migraine. My sinuses were stopped up, and I'd gotten some sort of devil mix of sinus headache/migraine that made me
so sick. I couldn't even lay down because I thought my head was going to explode. My migraine medicine wasn't working. I started panicking. How could the chemo do it's job if I wasn't rested? If I was throwing up all night and day??? Dr. K said we'd have to reschedule if I was that sick. I was crying, practically hyperventilating, which
definitely doesn't help. And I was so exhausted - all I wanted was to sleep, but I couldn't lay down. My dad just took me in his arms and held me against him and quieted me down, telling me, "Just fall asleep. I'll hold you up." And he did. My dad held me up until I fell asleep, and he held me up while I slept, long enough for my medicine to kick in, and then he put me into bed, just like when I was a kid. (Just so you know, I'm sobbing like a baby as I write this, because that's the most amazing thing anyone has ever done for me. It is so touching, and protecting ... and
fathering. It's beautiful.) That's my dad. This is the dad that has driven from Houston to San Antonio when I was so dehydrated from throwing up (after a night of heavy drinking) to buy me crackers and soda because I was so alone that no one cared enough to do that for me.
So I did get to start my first round of chemo as scheduled. I don't think I even used much of the stuff from my chemo bag. I had an allergic reaction to the Rituxan, they dosed me with Benadryl and Tylenol, and I zonked out. Eventually I got it down to a science. 3 days of chemo, recover for 4 days, and be back at work the following Monday. After my third round, I even traveled to Jamaica to "run" in a marathon for the American Stroke Association. I think I made it just over 6 miles. And then in the fourth month I bought a new car, and when I was done with chemo, I bought a house. The closing date was my 30th birthday. All of my end-of-treatment tests came out clean, and all that remained was 2 years of maintenance therapy with Rituxan.
THE FALLOUTI started having trouble with Rituxan after the second round, was a complete wreck for the third round, and Dr. K decided not to do the fourth round because of my condition. My life was such a mess, personally and professionally, that at that time, I honestly don't know if I was so fatigued and incapable of getting out of bed from the Rituxan or from severe depression. I was bursting into tears at work, I couldn't focus, I couldn't remember anything, and I was overcome with stress. I had to take a month off of work on doctor's orders because it seemed like I might lose my mind otherwise. It was as if all the time and energy I'd spent keeping a brave face and working throughout treatment was being sucked away as a late payment. I had been terrified (and pretending not to be) for almost two years, and it caught up with me in a bad way.
It took a few things (good and bad) to shake me out of my stupor: meeting a great guy who cared for me and re-lit my passion for design and life, and my mom dying unexpectedly. Mom's death woke me from a bad dream and I realized I couldn't live the way I'd been living. Life was too short to be dealing with bullshit, working at a place I'd grown to hate, and feeling so stuck and worthless that I sometimes thought it would have been better if the cancer
had killed me. That was no way to live!!! I decided to change my surroundings, my job, and make the most out of life; really start
living! I got a great job at a dream employer, moved to California, and JR and I are living together; we're going to shows constantly, going on weekend trips, just enjoying the hell out of all of it. And now I'm so glad I made it.
THE PRESENTAll of my checkups had gone fine, and when I moved to SF I got a new oncologist, the actual doctor at
Stanford Cancer Center who
invented Rituxan! And then in May I started to have symptoms again. And after two weeks, I called him and he said, "We need to get you in for a colonoscopy ASAP." So, in the middle of the biggest hell week of my work life at the G, I had to take a day and a half off to do this, and then fret over how long it takes to get the results.
It's so weird what this does to your psychology; the colonoscopy photos and the results writeup sounded really positive to JR, but they sounded like a death knell to me. Underneath it all, I've been so afraid that it was going to take me out before I reached five years after all. But it actually was OK - no significant changes since the last tests. I think I now have four colonoscopies under my belt (
so to speak!), and I still have to go back for checkups every six months (maybe I'll progress to a year between checkups eventually).
Dr. K said, "Once you've got this, you've got it for life." I understand that better now. It's never really gone. You are in remission, and you hope that it'll stay that way. But every little thing, every slight illness or pain you feel, you think it's the cancer, back to get you, and you panic. But that's normal. It'll happen for the rest of your life. You just have to remember: you're a cancer
survivor. And if it comes back, you deal with that then. There was a great poem on the wall of the chemo center in San Antonio - I don't remember it exactly, but the gist of it is this:
"You have cancer. Don't let cancer have you."
Labels: ashley, cancer
These days, I like my last name. I get to go by "V". There's a cool deli in NYC called 
