Cancer Warrior

A few years ago, my dad got sick and was diagnosed with colon cancer. To make a long story short, he had surgery and he got better. (Trust me, that is the very condensed version.) He was fortunate that he did not have to have chemotherapy or radiation treatment, but his recovery from surgery was long and slow. I'm happy to say that he'll be 80 in January and is doing quite well now.

I'm the oldest of four (girl, boy, girl, boy). My oldest brother took the family history thing seriously and had a colonoscopy and got a clean bill of health. Our dad was in his mid-70s when he was diagnosed and there was no other cancer in our family aside from a great-aunt who died with lung cancer many, many years ago, so those facts made it easy for the rest of us to just sort of not get around to getting checked. You know how you put things off? We do; we're really good at it. (Note: Since I first wrote this, I found out that several of my dad's aunts on my grandmother's side did have cancer, lung, breast, and colon, and that one of my dad's sister also has had colon cancer. I didn't realize that before. Interestingly, my grandmother celebrated her 100th birthday in May and has had no cancer and is, in fact, relatively healthy.)

Around the end of September I got an email followed by a phone call. Our youngest brother had been admitted through the emergency room and had a mass in his colon (actually, his rectum). CT scan and colonoscopy revealed cancer with spread to his liver and lung. Yes, it's as bad as it sounds. Our brother's life became a whirlwind as treatment was arranged. Currently he's being treated with chemotherapy and is tolerating the treatments actually very well. We pray that the drugs are working and, in fact, believe they are. For his privacy, I'm not going to elaborate much on his condition, but please do keep him in your thoughts and prayers.

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November 1, 2009

It's easy to say "breast cancer" or "colon cancer." Not so easy to refer to one's anus and anal cancer. But wait, I'm getting ahead of myself.

My brother's diagnosis (that's my brother with me in the picture) sort of knocked the wind out of my sails, so to speak. I don't live near the rest of my family, so while they were rallying around him, I was here. And I was having symptoms. (This is the hard part to tell; to admit.) I had been experiencing some changes in my bowel habit. I remembered that phrase as a symptom of cancer that I had learned probably in elementary school, very long ago. I worked on my diet, trying to get things back to normal, but they weren't getting there. And now a sibling was diagnosed with colon cancer. It was time to stop ignoring things, swallow my pride, and seek medical attention.

As a medical transcriptionist, I know the words and I know the music, but I don't like to dance. In other words, despite knowing illnesses and symptoms, I don't go to doctors. I've been healthy all my life (I'm 57) and was counting on staying healthy at least until Medicare kicked in at age 65. I don't even have health insurance. But I knew I had to do what I had to do to have these symptoms checked, so I built up enough courage to call and set up an appointment to establish with a local primary care doctor. I got in quickly (cash in hand) and between my symptoms and my family history I was set up for a colonoscopy within days.

I survived the colonoscopy prep (which isn't really so hard to drink, it was just a matter of sitting in the bathroom all night and not being able to sleep) and my husband accompanied me for the procedure. An IV was inserted and Versed (sedative) and fentanyl (for pain) were administered. Next thing I knew, I was waking up in recovery. Versed causes amnesia and I still can't remember exactly what happened next, but somebody told me there was a mass and it was cancer. Frankly, by then I wasn't particularly surprised.

The GI doctor who did the colonoscopy scheduled me for a CT scan of my abdomen and pelvis, to be done the next day. I was able to drive myself there and had to drink a a contrast solution when I got there so that dye inserted via another IV would show the organs more clearly. Drinking the solution was no problem at all, especially since it was a lot less than I had to consume the night before, and the CT was fast and easy. Then I went home to wait "three business days" for the result. I used that time to rest and advance my diet slowly. It actually felt kind of good to have my GI tract empty, so I started with soft foods and built up gradually.

The following week I had my first appointment with the oncologist, or cancer doctor. The news wasn't good, but it was much better than the initial GI doctor had told us (I'll spare you that). It's a squamous cell cancer in the anus, the outer inch-and-a-half of the body where waste is eliminated, with no spread to other organs! Standard treatment for anal cancer is chemotherapy and radiation at the same time, for five weeks. Radiation is given five days a week for the five weeks, with two chemotherapy drugs (5-FU and mitomycin-C) being infused through a port in the chest for the first four days and the last four days. (Actually it's the 5-FU that takes four days; the mitomycin-C takes about an hour each time, as I understand it right now). I would have a port surgically implanted in my chest to make the infusion easier. I knew my brother had a port, so I already understood about that.

The cancer doctor and his staff were FABULOUS. They spent a lot of time with us, did an exam (yuck, but short), talked to us and talked to us again. We discussed how we were going to pay for this and they assured us that I would be treated, no matter what. They made me promise to call if I had any questions.

Next stop was the surgeon, a couple of days later. He, too, was wonderful and very encouraging about the port placement. You'd have thought I was having open heart surgery with the preop questions and EKG that I had to have, but it's good that they're checking me out thoroughly.

I still haven't seen the radiation doctor; that should come very soon and then I'll be given a date to begin the five weeks of treatment.

Oh, did I mention that they said anal cancer can be cured? In five weeks' time? That's what we're hoping and that's what we're expecting. Since our appointments, I've been reading online and have found a fantastic forum with people who have the same diagnosis as mine, so I'm learning a lot and have people who can answer my questions as they arise. I am realistic enough to know that things don't always go as expected, but I am claiming victory from the start. The treatment isn't going to be fun, but I am expecting the best, expecting to persevere one moment at a time.

I'll update here as I can. If you've read this far, I appreciate it. Continue below to see my timeline and for some great links for more information about anal cancer and related topics.

So far:

• Sept 25, 2009 - My brother was diagnosed with colorectal cancer.
  
• Oct 15, 2009 - My first appointment with Dr. W, my new primary care doctor
  
• Oct 20, 2009 - Colonoscopy which revealed the mass
  
• Oct 21, 2009 - CT scan of abdomen and pelvis
  
• Oct 28, 2009 - First appointment with Dr. M, medical oncologist
  
• Oct 30, 2009 - Appointment with Dr. S, surgeon, to discuss port placement
  
• Nov 3, 2009 - Port placement surgery - Done!
  
• Nov 4, 2009 - Chest CT scan
  
• Nov 5, 2009 - Appointment with Dr. C, radiation oncologist
  
• Nov 6, 2009 - Our baby brother's 50th birthday!
  
• Nov 6, 2009 - Rad/onc CT, when they calculate where to aim the radiation.
  
• Nov 9, 2009 - Lab
  
• Nov 11, 2009 - 9:00 Start chemotherapy Got the mitoymcin infusion at the cancer center, then got my fanny pack hooked up with the "to-go" dose of 5FU to wear for four days. I'll get unhooked on Sunday morning at home.
  
• Nov 11, 2009 - 11:00 First radiation treatment (repeat daily) I feel confident in the technicians, that they had everything lined up well to aim those killer beams in just the right place.
  
• Nov 15, 2009 - Julie did a great job unhooking me from the chemo - in my kitchen. Nurses rock!
  
• Nov 18, 2009 - Feeling so much better today. The chemo knocked me down a bit harder than I had realized.
  
• Nov 23, 2009 - Our sister has an appointment for her colonoscopy and brother has his CT scan. UPDATE: Sister had a good result with her colonoscopy. She's fine!
  
• Nov 24, 2009 - My brother's tumors are shrinking - good news! His chemo resumes next week.
  
• Nov 25, 2009 - Lab today showed very low white count. I'll take it easy over the long weekend, avoid germs, and have it rechecked on Monday. Hopefully it will go up on its own.
  
• Nov 26, 2009 - Have a blessed Thanksgiving, everyone!
  
• Nov 30, 2009 - White cells are low, but not too, too low. I'm continuing to take it easy and let my body rest. Weird that my hair started falling out today. Hopefully that will stop very soon. UPDATE: 12/9 - Hair is still thinning, but it's not too bad and I don't think I'll end up bald, but time will tell.
  
• Dec 9, 2009 - Second (and final) four-day round of chemo begins. So far, I'm feeling great!
  
• Dec 24, 2009 - Celebrated Christmas with my family at home, a sweet, sweet day surrounded by loved ones.
  
• Dec 30, 2009 - LAST TREATMENT DAY! Now it's time to heal. I'll be reassessed in the near future to see if the treatment did its job. Please pray for NED (no evidence of disease). I'll let you know!
  
• Feb 9, 2010 - CT scan to check if the cancer is gone
  
• Feb 15, 2010 - A sweet day-after-Valentine's-Day visit with my nurse practitioner. Blood work is excellent. Scans look GOOD! NCCN Guidelines say "Complete Remission." GOOD NEWS!
  
• August 2, 2010 - Next oncology follow-up visit. Pray for a clear exam!
  
• Next five years - Follow-ups exams, anoscopy, and/or scans every 3-6 months. I am to report any symptoms at all immediately. This time I won't put it off!
  

I'll continue to use Twitter for occasional updates and to relay immediate needs. Please keep the prayers coming. We need to KEEP this monster away! Keep praying for my brother. He's taking a break from chemo right now and feels "like a new person," but he has to resume treatment soon. Do you believe in miracles?? I do!

Today, day 50 overall, I received my 33rd and last radiation treatment. I've graduated! I even received flowers, courtesy of the local cancer support house. Now it's time to heal.

Actually, my body is already healing; I can tell. My sometimes-foggy "chemo brain" has cleared up and I can concentrate better. My appetite is coming back and I can actually eat a little bit more at a time of a few more foods. It'll be awhile before my system can handle digesting lots of raw vegetables and fruits, which I've really missed. I'll probably still begin each day with a cup of Cheerios, which has become my fuel of choice in the last couple of weeks. Soon, I'll start replacing some of the 20 pounds that I've lost (not all of it, though) and my strength and stamina will return. I'm ready to begin a light exercise regimen to get back in shape. The burned areas are already starting to peel away and improve, though it will be a few weeks before my skin begins to look and feel normal, my new "normal;" that area will never look the same.

The daily trips to town are over, though I'll go weekly to check blood counts. I'll see both the medical and radiation oncologist on January 22nd and we'll decide what scans or other tests I'll need to be evaluated to be sure the bad stuff is all gone. My body will never be the same and I'll be monitored probably for life and certainly for the next five years. Any tiny ache or pain or potential symptom will likely stand out like a huge red flag and this time I promise not to ignore any clues my body chooses to present that there could be a problem.

As winter turns to spring, my body will take on new life. This warrior is claiming victory!

UPDATE: Four weeks later, my blood counts have returned almost to normal and I'm eating well and gaining strength and stamina every day. I exercise daily and I'm adding to my diet on a regular basis. CT scans to be sure it's all gone will be done within the next two weeks. I'll update again then. Keep praying, and keep praying for my brother who continues to undergo chemotherapy for his colorectal cancer.

Haven't posted an update lately, so I thought I'd catch you up. My brother has been on vacation from chemo for a few months now. He had a CT scan this week and got a good report. Things are stable, so he has two more months off from treatment. This is great news!

As for me, in April I had an exam by a colorectal surgeon and things look great! Whenever you hear the word "benign" you know you have cause to celebrate. This week I saw my oncology nurse and had lab work done. Blood counts are great. Tumor marker level is awesomely normal! Next checkup for me is in three months. THREE MONTHS without a doctor visit. Wow!

UPDATE to this update: June 4, 2010, our dad had a colonoscopy today, a six-month follow-up after the last exam revealed (and removed) polyps. This time he's clear and the doctor wants him back in TWO YEARS! Fabulous news! Go, Daddy!

We will be praying for continued good health for Daddy and me, and recession of tumor for my brother. I hope you'll join us. We know for a fact that prayer really does work. To God be the glory!

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I haven't updated here for awhile. Good news is that I've had my three-month checks with both specialists and all is well. To quote one: "I see nothing concerning. Let's do it again in three months." I can live with that. Update: October 25, 2010, I met with my oncologist and I'm doing fine. Another three-month follow-up appointment to look forward to - in February 2011! (That sounds so far away!)

Bad news is that my brother is not doing so well. He started chemo again in August, but on September 10th he was diagnosed with an abscess "inside" following a couple of spells and spiked fevers. He spent the weekend in the hospital and talk is now of radiation to try to get rid of the abscess. He needs lots of prayer right now.

More news later.

It's Christmas and in a few days I'll celebrate the one-year anniversary of the end of my treatment. I had another three-month follow-up with the oncologist the end of October and that went well. Had another follow-up exam with the surgeon who this time says he'll see me in SIX months. That's progress!

Since I last updated about my brother, he's had surgery and now has his back-door plumbing routed to the outside (I guess that's one way of putting it). He actually has healed pretty well from that surgery and is doing okay, now trying to eat more and put some weight back on. Overall, he's doing a lot better than he was before. Of course he has a lot more disease to deal with, but you'd never know it by talking to him; he sounds great and never complains!

Hope everyone has a very special Christmas and that you'll take a minute out to be thankful that you have your loved ones with you, even if you're separated by geography. I believe in celebrating like this will be my last opportunity because life is fragile, unpredictable, and much too short to take anything for granted.

Have a wonderful, happy, and healthy new year!

It's hard to believe it's been over 13 months since my last treatment, but last Thursday, February 3, 2011, I had my one-year follow-up scan. Yesterday, Monday, was my regular three-month follow-up with the oncologist where I learned that the scan was all clear. I knew it all along, but it was wonderful to hear the official pronouncement that I remain cancer free. I was amazed at how many "likes" and comments I received on my Facebook page when I announced the news. I'll be on a three-month follow-up schedule for a while longer, so I'll see Dr. M again in May. I don't mind a bit. No matter how well I feel, it's always a relief to know officially that things are looking good.

My brother has re-started chemotherapy and is hanging in there, but he certainly needs our prayers. Continued thanks for your support for our entire family through this crazy time.

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