Sat., Jan. 21:
My first entry for the new year! Happy 2012, everyone! Hope you all had a wonderful holiday season. It's great to be back home from a memorable 2.5 weeks slathered in SPF 50 while in Australia! It's summertime there, and the sun is extremely -- extremely -- intense!
This is the year I'm going to say "screw it" and move forth with my regular physical activities -- including running! After a year of physical therapy for my herniated disc, torn rotator cuff and peripheral neuropathy, I'm ready to take back my life, damn it! Hahaha!
I am a self-professed workout addict, so I must remember not to overdo my workouts by gradually getting into it -- "gradually" being the key here.
I did my first HIIT (High Intensity Interval Training) session of the year this morning with a brisk walk of at least 3.5mph interspersed with 1 minute of an easy jog of maybe 5mph every 4 minutes. My goal is to gradually decrease the time in between each walk/run interval until I'm just running with no more walks. I always follow up my workouts with 15-30 minutes of stretches. And of course, I'll continue my physical therapy one to two times per week at home. I'm currently lifting weights twice per week. I do not plan to train for any more fitness competitions (figure or bikini division) any time in the near future. I think my body's had it, and I have to be good to it so that it can perform without any more problems for the next 50+ years (smile).
Final thought for the day:
Thurs., Feb. 9:
I cannot say this enough: I want to say "thank you" to all of you -- patients, survivors, caregivers and friends whose lives have been touched by colon cancer-- who share your personal stories with me and always have such kind words for me. Although my last FOLFOX chemo treatment was on April 7, 2006 (goodbye chemo pump, hose and fannie pack!), I continue to remain active as a cancer "buddy" with my favorite colon cancer organization, the Colon Cancer Alliance (CCA). This is one of several colon cancer websites I perused when I was diagnosed with Stage III Colon Cancer on Aug. 29, 2005. I learned a lot about what to expect with surgery and chemo treatments. I also sought and found solace in reading about other people's personal experiences. I even made online friends and continue to maintain these friendships through email and now FaceBook.
Last night, while attending a webinar on the Colon Cancer Alliance website, I was amazed at how much has changed since I was diagnosed. I didn't have the exposure to a CCA online chat forum where I could send and receive instant-messages. There weren't free webinars where doctors and other medical professionals were available on a regular basis. There are drugs that are now available to alleviate the lack of energy from chemo which I certainly could have used back then (I was bedridden during treatments). And now, there's information about new drug protocals.
For instance, I learned through last night's webinar that patients who are given Oxalyplatin, one of the drugs in my FOLFOX cocktail, should take "breaks" in between treatment. I had six months' worth of treatments without any breaks. I'm suspecting that this drug is the cause of my permanent neuropathy -- numbness in my fingers, toes, feet and lower left leg. I took all of last year to recover from three competitions in 2010 and do physical therapy for my torn right rotator cuff, herniated L4-L5 discs, lumbar arthritis, and my left foot and leg having a mind of its own, causing me to walk with an odd gait, trip and sometimes fall. I had to forgo lifting weights and running. That was like asking me to quit breathing!
ANWAYS -- I meet with my physiatrist later today (again, not a psychiatrist, though my husband probably thinks I might benefit from seeing one -- hahaha!) to follow up on my left foot/leg problem which started two years ago when I was running and fell because I didn't know where my foot was while it was in mid-air during toe-off. I couldn't feel it! I've seen a neurologist and gone through many procedures, two of which were quite memorable -- an EMG and a spinal tap, which thankfully ruled out Multiple Sclerosis. The neurologist does not believe my chemo would have anything to do with my problem, but excuse me...I beg to differ.
I've also seen an orthopedist and I've gone through a year of physical therapy for my lower back, shoulder and leg/foot. I have a DVD of my gait which one of my physical therapists recorded. I'll be sharing this DVD with the physiatrist and also telling him that I would really like an answer to my leg/foot problem, even if it's "I really don't know", or else a referral to someone who can give me an answer or further look into my problem and give me a final assessment -- hmm, maybe a podiatrist? I want an answer! I DO know that it is not a muscular problem, and my therapists both agree with me. I have always thought it was a neurological problem stemming from chemo -- you know, the stuff that kills cells and gets pretty close to killing the patient just before it's time for a few days off...only to start back up with the poison and start over again.. Now this, my therapists will neither confirm nor deny, but they do think it's neurological and not muscular. So let me see what the doctor has to say today and I'll fill you in as soon as I finish up with him.
Fri., March 2:
Today marks the end of my 2-year quest to finding a "medical diagnosis" to my foot problem. This is what is known: disc degeneration, spinal stenosis, and arthritis to my lumbar region. The physiatrist believes my past chemo treatments more than likely contributed to the rapid, early-onset disc degeneration and caused peripheral neuropathy which really accentuates my foot problem.
My left sacroilliac (SI) joint pops out of place which then aggravates the sciatic nerve and worsens my gait and lower back pain. The physiatrist showed me how to "pop" the SI joint back into place. I am bypassing cortisone shots for back pain. It would just mask the problem and not "cure" my foot problem, and considering I suffered from severe spinal headaches after my last shot, it's just not worth it to me.
I will continue at-home physical therapy and stretches to strengthen my hips and core in conjunction with my regular exercise regimen. Until I get complete control of my left foot, I will be relegated to intervals of walking and running outdoors. I prefer outdoor cardio to the gym treadmills and elliptical machines. I really miss being able to run 3-6 miles with no problem at all (sigh)! Maybe one of these days I'll be able to run continuously, but in the meantime, I'll have to remind myself to quit thinking about what I can't do (run distance) and take advantage of what I can do (run intervals).
Wed., March 28:
I started fasting last night for this morning's blood work and contrast CT scan. Since I'm having a colonoscopy tomorrow morning, I won't be able to eat any food until tomorrow afternoon. That's 37 hours total of fasting for me! Yikes! I can have any clear liquids (nothing red for sure), black coffee, jello or popsicles, but I haven't had any of the above because I want REAL food and not just some hot water with flavorings. I'm hungry, my tummy's growling, I feel lethargic and I'm getting ready to do the colon prep. Ugh!
Met with my oncology nurse practitioner this afternoon to review results of this morning's procedures. Blood work looks great. However, CT scan showed "something" (or, as stated in the report, "a contrast enhancement") on my liver. This happened to me in 2010 and was told it was a "fold" - nothing of concern - that might just be a faulty (unclear) CT image or rather an anatomic fold on my liver that might be casting a shadow on the CT image. My oncologist will compare the last few CT scans to this image and let me know more information at my meeting with him tomorrow evening after the colonoscopy.
Speaking of colonoscopy, it's 6:30 p.m. and I just finished drinking my last 8 oz cup of Golytely solution to cleanse my bowels for tomorrow morning's colonoscopy. I'd like to give a few tips to those who are scheduled for a colonoscopy or know of someone who's scheduled to get one soon. I'm going to get a little graphic, so if you don't want to read anything about nature, then STOP HERE. Otherwise, you may proceed:
A. 2+ hours prior to cleanse: Refrigerate your gallon jug after you've thoroughly mixed the solution with water as directed. I did this last night and felt the liquid was too cold after my first 8 oz cup. So I left out the jug on the kitchen island without the cap.
B. Chug -- do not sip -- the drink. Then,
C. Set your kitchen timer for 10-15 minutes. Repeat B and C until you are finished with your solution (or, see Item 7 below).
1. This whole cleansing procedure will last around 3-4 hours. BE PREPARED to use the bathroom very, very often. This is not something you can simply "hold" for a second. When it's time to go, you WILL go! I would not plan on being anywhere for 4 hours other than in my own house with my own bathroom. LOL.
2. Wear comfortable pants, something you can slip on and off without having to fumble with buttons, zippers or hooks -- I like my comfy sweat pants and would feel odd wearing a skirt or dress for this function (no pun intended).
3. Have a comfy sweater or something that hits you at or above your waist. Again, you don't want anything getting in the way of your bathroom trips. I got the chills when I was into my 4th glass of solution -- probably due to the chilled solution itself and probably from not getting any calories in today.
4. Dab Petroleum Jelly or Desitin AROUND (not IN) the cleansed area. Do this before you drink your first 8 oz of colon prep. For women, include the perineum.
5. Use flushable wipes unless you start stinging in the area (the wipes have something similar to alcohol in them). I personally prefer Charmin Ultra Soft toilet paper to the wipes until toward the end. I think Charmin Ultra soft is the softest-ever toilet paper in the world!
6. DAB, not wipe.
7. I was told I could stop drinking the colon prep once my bowel movements become clear to slightly yellow. This left me with maybe an inch of liquid left in my gallon jug.
8. Stay Strong! Think of how flat your tummy will look tomorrow (just kidding) and more importantly, how yummy your meal will be after your colonoscopy!
9. You will be groggy most of the day you undergo your colonoscopy.
10. Always get your doctor's approval with any info you read in print, hear on the radio, or watch on TV.
Thurs., March 29:
Woke up this morning and was 4 pounds lighter than yesterday. Too bad I gained back all four pounds after dinner tonight. Oh well...hahaha!
No more liver scare! What the doctors saw on the CT scan yesterday is another result of my past chemotherapy: the blood doesn't transfer smoothly (perfusion) through the liver and shows up darker on the scan. So now, this will be "my normal".
Colonoscopy went well. However, gastroenterologist (GI) took a biopsy at the anastomosis, the area where they joined my colon back in 2005. The GI and oncologist both do not think it is cancerous. Biopsy is part of their protocol. I should get results on Mon., April 2.
Mon., April 2:
Spent the day at the beach with a neighbor friend, but my mind was on the biopsy. I called the oncology department around 3pm, but the nurse was unavailable. I was told the nurse would call me later today or first thing in the morning. By the time we left the beach, picked up Andrew from school and got home, it was around 5:30 p.m. and a nurse had my results: pre-cancerous. She told me that the doctor would be back next week and would contact me with more information. I wasn't thinking clearly at that point in the conversation and didn't ask any further questions. I felt numb.
My husband is out of the country on business, so I couldn't share the news with him. I called my baby sis, Gina. No answer. I called my best friend who was indisposed and would call back. I called my neighbor friend who offered to come over, but I gently refused because I was an emotional mess. I really just wanted to tell someone. She understood and offered to help in any way. I called another good friend, Amy, who was so kind to rush to Gina's and get her to call me immediately and I told her the news.
There was a knock at the door. Yay! My Zappos shoes orders arrived! I LOVE shoes! It was like Christmas and a great distraction for me at that moment. Andrew helped me open all of the boxes (7 pairs of shoes), and I spent some time trying on all of them for size. Decided to keep two and return the others (free shipping!).
The phone rings. My best friend Kelly's on one line and her husband, Dan, on the other line. They are great friends who offer warm, encouraging words and then some comedy along the way for a few laughs. Dan suggests I call back the oncology department tomorrow morning and try to get more answers to my questions: Is it a polyp that was already removed during the colonoscopy? If not, can the surgery be done laparascopically? Do I need adjunct chemotherapy? They put it in perspective for me: my biopsy results are PRE-cancerous, not yet cancer. They caught it early this time and I am in great hands at Mayo Clinic. Love my best buds! Kelly and I have been best friends since our oldest ones were 2. They're both 21 today and will be 22 toward the end of the year. Good friends are the best; best friends are wonderfully amazing!
As I was re-boxing the shoes to be returned, another knock came at the door. It's Amy with a key lime pie in one hand and a beautiful potted orchid in the other. Hugs. Wine. More hugs. Then my two sisters and another family friend show up with a bottle of Gran Marnier. More adult beverages? OK, twist my arm. Family, friends and a few adult imbibements. We talk, sip drinks and by 10pm, good-bye hugs were passed around the room. I finished the drink I nursed all evening and tucked my just-showered "baby boy" (he'll be 10 next month) into bed.
"I love you too, and don't worry. I don't think I'm going to need chemo this time. Good night, son."
"Good night, mommy."
This is all so different from the first time I was diagnosed with Stage III colon cancer. I was far away from my family and friends, though I was lucky to have my in-laws live about 2 hours north from us in MD. It's so nice to be back home. I don't feel alone for a change. I feel very blessed to have a close-knit family and a group of great friends nearby. I really am a very lucky girl.
Tues., April 3:
My best friend Kelly and I had lunch together and did some window-shopping at the mall earlier today before I get home to a voice mail from Mayo Clinic. I return the call and the nurse says it wasn't a polyp they need to remove, it's the actual anastomosis that was biopsied. The anastomosis is the site where the two ends of my colon were resectioned or rejoined after they removed the cancerous tumor plus more colon from each side of the tumor. The anastimosis is a very common site for cancer to crop up again. She is making an appointment for me to meet with a colorectal surgeon to discuss the removal plan in detail. I just really, truly hope that I do not have to undergo adjunct chemotherapy again. Cut it out, sew back the pieces, but please no chemo as it really kicked my ass last time.
I tuck Andrew into bed, and as he finishes up his evening prayers, he adds two more special ones:
"Dear Lord, please do not let my mommy die or get chemo. Please make her feel better fast. And Lord, please make my cousin Jordan do really well at his first track meet tomorrow afternoon. Thank you, Lord. Father, Son, Holy, Spirit, Amen (doing Sign of the Cross)."
I hug and kiss him and let him know how sweet and thoughtful his prayers are tonight. It starts thundering, lightening and raining hard outside. He falls fast asleep within minutes, lulled by the sound of the storm, and I kiss him once again.
I get into bed, but I toss and turn for a good 30 minutes before I decide to get out of bed and get on the computer. These thoughts racing through my mind, these all-too-familiar feelings, bring me back to the days I was diagnosed with cancer in 2005. I finally fall asleep around 2:30 a.m. next to my little Andrew.
Tues., April 10:
Your kind thoughts and prayers
worked! No surgery or chemo needed! I'm ecstatic to say the least! Yay!
But what's to happen with the pre-cancerous anastomosis site? Guess my
oncologist and the colorectal surgeon deemed it is not necessary to do
anything at this time. I'm sure they'll be keeping a close watch on me.
I'll find out if I'm going to need another colonoscopy later this year.
May be back to twice-a-year "scopes" as opposed to once every
other year as I started in 2010. Better safe than sorry. But for now,
I'm so, so glad I won't be undergoing surgery or chemo. Later...but not
now. Thanks again to all of you for your wonderful words of inspiration.
I was going nuts these past few weeks, and you all helped me put things
in perspective with a smile. Cheers!