Re ~ Connect

Well, some times when you tell a story, you leave out some details until you are ready to share them. And this happens to be one of those times. I've wanted to tell this many times, but didn't have the courage. I've now found the courage to let you know more of my story. After my surgery to remove the cancerous mass and perform a colon resection, my surgeon had to give me an ileostomy to allow time for my colon to heal. I would have an ileostomy until six weeks after completing 12 rounds of adjuvant chemotherapy. Having an ileostomy was very personal, so I only let a few people know that living with an ileostomy had become part of my life. 

Read on with caution: If it seems like too much information, consider it an education.

What is an ileostomy you may ask? Click here for more information, but the short answer I tell people is, think of a colostomy, but instead of it being made from your large intestine, it's created from your small intestine. Therefore, I had to wear a pouch to collect my stool, but still had the ability to urinate on my own. This new way of life brought about many changes yet interesting experiences. I also learned a lot about the digestive track that I still use in my life after my ileostomy reversal.

My new appliance took a toll on me mentally, physically and emotionally. Mentally, I had to adjust to the fact that my body wasn't completely healed and God was still working on me. I so badly wanted it to be over after the surgery was done, but I had a daily reminder that it wasn't over just yet. After going through the most horrific experience of radiation and having such an invasive surgery, I was tired and didn't want my frail body to be put through anymore pain and suffering. I wanted to be me again. Physically, just imagine having to wear this device and always wondering if people could see it. This was a part of me, for now. I had to change my sense of style. I could no longer wear certain clothing items because my pouch would show or could open and leak its' contents. I began wearing baggier pants, no skinny jeans; looser fitting tops and blouses, nothing form fitting. I even had to be careful what type of underwear I wore because they had to fit under the adhesive of my pouch. Also, I had to be mindful which colors I wore because the lighter the color, the more one could see my pouch. I didn't purchase all the other products available to conceal the pouch because I had no intentions on having an ileostomy for a long period of time. It was a learning experience and I began to appreciate the simpler things in life and identified with other ostomy wearers. Emotionally, wearing this appliance made me feel less sexy. After losing so much weight I was already self-conscious, and this new way of life made it worse. I knew it was only temporary, but I still had to deal with my day-to-day reality until my ileostomy was reversed. 

Nutritionally, because an ileostomy is formed using the small intestine, my body could not absorb many nutrients since it was released into the pouch through what is called 'output'. I could not eat raw fruits and vegetables because they were too fibrous and my doctor recommended a low fiber diet. Therefore I was now eating white rice and pasta, cooked veggies and chicken, fish, and turkey. Since I don't eat red meat and pork anyway, the proteins I ate were not a problem. It was the white rice and pasta along with very limited fruits and veggies. I love salads, but those had to be put aside, for now. I was also afraid of getting a blockage. A blockage, at its worse, meant having emergency surgery to unblock the small intestine. I was not going to have ANY of that. I was advised by the ostomy nurse to chew, chew, chew. I basically chewed my food until it was pureed so it would have no trouble passing through my stoma. I was no longer able to take my horse-pill vitamins because they would definitely block the opening of my stoma. I was supposed to drink at least ten glasses of water each day so that I wouldn't become dehydrated. But like I said, supposed to. I have never been one to drink enough water and this experience didn't change that. I did, however, drink more water when I'd eaten a big meal just to help it pass without any problems.

One would think that living with an ileostomy was the worst thing, but it was actually quite convenient. I would empty my pouch about 5-8 times a day and would change it every 3-5 days. I had to empty it more often right after having my chemotherapy treatment, because chemotherapy can cause diarrhea. Also, since I hydrated for four days after each treatment, this meant more output, so more emptying was necessary. A lot of the liquid ended up in the pouch. I also had the convenience of not being able to pass gas through my anus. It was now expelled through my stoma. My gas went directly into the pouch, made it puffy and easy to see through my clothing.

The people that knew I had an ileostomy had several questions, so I thought I'd continue this post with FAQs.

1. What does your stoma look like?
Click here to see. But I would tell people it looks like a baby's circumcised penis. Mine was a little more narrow than what you see in this first picture. It has a small opening at the end, just like a penis, but the opening is to pass stool, not urine.

2. Does the stoma hurt?
Because there are no nerve endings in your intestine, I could not feel anything when it was touched.

3. How do you empty the pouch?
There are many types of pouch systems one can choose from. I'd chosen the one that closes with a very sturdy velcro closing. I'd have to sit on the toilet with the opening of the pouch pointed inside of the bowl. I'd open the pouch and release the contents. Because I am a germaphobe, I always wore medical examination gloves just in case any of the stool accidentally touched my skin. In addition, I had a water bottle that I would use to pour water into the pouch and clean out any stool that was left behind after emptying. I didn't want any lingering smells or stool to touch the skin around the ileostomy opening. When this did happen occasionally it would irritate and burn my skin. I was not told by anyone to clean the pouch after emptying, but as I've said, I'm a germaphobe.

4. What does the stool look like?
The best description I can give is that it looks like a combination of diarrhea and vomit. Since the large intestine pulls the water from your stool and helps it to harden, this never happened in my case. My large intestine was not being used so my stool was very liquidity.

5. Does the stool smell when you empty it?
It has the most pungent scent I've ever smelled. It is indescribable and has its own unique scent. The scent could also be affected by what I ate. Seafood made it worse. No matter how I tried to disguise the scent, it didn't work when I had eaten seafood.

6. How would you empty the pouch in public?
If I knew I was going out, I would place drops of deodorizer inside the pouch. Ostomy companies make a special deodorizer solution for ostomy wearers. Many times it would cover the scent when emptying. However, I had a routine. As I emptied my pouch, I would flush the toilet before the scent had time to escape. I always carried air freshener made for ostomy wearers that would neutralize the scent. I'd spray this in the bathroom stall before I exited.

7. Were you embarrassed to empty the pouch in public?
In the beginning I was, but I had to accept this as a temporary way of life. So I would just tell myself that it was ok because I'd never see these people again anyway. If I was in someone's home, I'd forewarn them about the scent and said that if they were really a friend, they'd understand. After some months, that was the least of my worries.

8. Did the pouch ever open accidentally?
Yes. The first time it opened I was grocery shopping. I had no idea why I had a wet spot on the front of my pants. I went into the bathroom and quickly realized what was going on. I cleaned myself up, exited the bathroom, paid for my groceries and headed home. It was such an experience. It happened a few more times after that. When I was getting close to having my reversal, it would open more frequently. I could not figure out why, but wasn't really concerned because I knew the ending was near. I would always carry an extra set of clothes and pouch supplies in the trunk of my car in case it was really bad.

9. Did having an ileostomy limit you in any way?
It did not limit my physical activity. I was still able to walk around, exercise and sleep. However, I could no longer sleep on my stomach. I purchased a bed wedge to relieve the pressure off my abdominal area and help me to sleep diagonally while laying on my back. Although I wasn't supposed to eat raw fruits and veggies, I knew I needed them to help me heal from the chemotherapy. I purchased a Vitamix and began making smoothies with added protein powder to get body healing nutrients and to help add pounds to my small body. My cousin also purchased a Nutribullet for me so that I could make juices with all the fruit's nutrients. I was determined to get healthy against what the doctor had ordered.

On October 22, 2013 I had my ileostomy reversal. This meant that my stoma would now be placed back inside my body and that part of my life would now be over. I was looking forward to this surgery because I wanted things to be almost back to normal by Thanksgiving. I wanted to be able to eat the foods that my family traditionally prepared at that time of year. The recovery time is 4-8 weeks and now I know why. My colon specialist performed the surgery that Tuesday afternoon. The surgery was supposed to last an hour, but mine lasted two hours because she found scar tissue that had formed and needed to be removed. I was happy to hear afterwards that everything else went well. I was in the hospital for 3 days following my surgery. If you've had abdominal surgery in the past, you'd know that passing gas is a formality before being discharged. I was so excited to pass gas because it had been almost a year since I was able to do it the normal way. I was placed on a liquid diet because the large intestine had to now begin working. It took about two days for this to happen. Once my large intestine began working I was switched to a soft foods diet to see how my system would tolerate solid foods. I did ok with this but had to be switched back and forth from liquid to soft foods because it didn't happen easily. I was in some pain, of course. I had my pain button, which dispensed Diladid, to help me manage the pain. This stuff works GREAT!!! It would put me out after several doses. I tried not to take too much because pain medication can make you constipated and that was just the opposite of what I wanted. I remember one night I was in so much pain and the Diladid was not working. If you are ever in the hospital and crying out in pain, ask for some Toradol. It can't be used continuously, is injected via IV, and it did exactly what I needed it to do. After two doses, 5 hours apart, I felt SO much better. Now I just wanted to go home. Eventually I was discharged, given my instructions and prescriptions, and ready for the next part of the recovery.

Since being home it has not been easy. Remember that one foot of my large intestine has been removed and since I had rectal cancer, a portion of my rectum was also removed. The reconnection was successful in that I did not have to have a permanent ileostomy or colostomy, my sphincter muscles are intact and the cancer was removed, but all of my body's functions are not back to normal. I am adjusting to my new way of living, trying to figure out how my body responds to different foods. The doctor says it may take up to a year before I have a regular and predictable bowel regimen. I'm still not able to eat salads, but I do try every now and then. Eventually my body will be able to handle it. Daily, I take over the counter medications to help control my bowel movements, but it's still hard sometimes, and painful might I add. Sometimes I even wish that I still had my ileostomy. According to the doctor my bowels will never get back to how it was before this experience, I just have to learn how to manage it and make it work for me.

Some things I've learned and still continue to practice:
1. Although I've known this from my nutritional classes: Chew, chew, chew. It helps with digestion and makes it easier on the body.

2. Corn wrecks havoc on the intestines. After seeing that little hole our digested foods travel through, I see why people with intestinal problems are told to stay away from corn, as well as, popcorn.

3. Our bodies are amazing machines. Take care of it and it will take care of you.

4. Our bodies need water. Drink 1/2 your body weight in ounces each day to be sure you are getting enough liquids.

5. Our digestion system works 24 hours a day, 7 days a week, 52 weeks a year.

All in all, I'm happy to still be alive to live out God's purpose for my life.

If you have additional questions, please feel free to post them.

It is Finished!

Today marks one month and one day since my last chemotherapy treatment. It feels good to not have to sit in that chair and have that toxin injected into my veins to prevent the spread of cancer cells. Many have asked why I opted to have chemotherapy and not heal myself using herbs. I have given this much thought because I usually make decisions for my health that are more natural via herbs and less medicinal via doctors. Frankly, I was scared and wanted to live so I took the easier route. However, either way was second to my belief that God would heal me.

As a resident of Brooklyn, New York for more than 35 years, I called St. Paul's Community Baptist Church my church home. I was a member of this congregation for 18 years before moving away. While there, I heard a message given by Rev. Melvin Anderson entitled "It is Finished". When I thought about my journey thus far, I was reminded of this message because It is Finished. I am so thankful to have finished my treatments. It took 9 long months, but It is Finished. As you read this statement you probably placed the emphasis on the word Finished. But as Rev. Melvin Anderson preached in his message, the emphasis is on the word It. So let's say that again...It is Finished! It stands for so many things. It = chemotherapy treatments, pump of chemotherapy drugs to take home, feeling of nausea, sleepless nights, extreme fatigue, hair loss, weight loss, metallic taste of foods, cold sensitivity, mood swings, chemo brain (although this still exists, just not as bad), darkening of hands and feet, darkening of skin, loss of appetite, loss of color, port flushes, home hydration, blood tests, purchase of head scarves, purchase of size 0 pants, and worry from family and friends. Now all of this has turned around for me. I am on the upswing, getting back to the person I once was. All praises to God Almighty.

I had to make a short trip to the infusion clinic last Monday. It felt good to walk in that room and sit for 5 minutes as they flushed my port. I will have the port removed later this month, so my next visits to the infusion clinic will be to drop off some goodies. I am thankful for how well the nurses took care of me and it's so important to let them know.

So I say again, It is Finished!!!

No more infusion

Last chemotherapy infusion appointment

No more pump

On my way to get my pump disconnected for the very last time.

My Name Is Victory!

Friends...How Many of Us Have Them?

A friend loves at all times, but a brother was born for adversity.

Proverbs 17:17

My sister has been there for me through thick and thin. She is not in my life for just a season, but for eternity. Although I didn't choose her to be my sister, I wouldn't make a different choice if I could. However, I have been able to choose my friends. I have never been the type of person to have several friends. I also believe there is a huge difference between friends and acquaintances. Now several acquaintances I have, but I could count my true friends on one hand.

This experience has taught me what it means to be a friend (now I need two hands to count them all). It has shown me who my friends are and who I can depend on in time of need. This experience has also shown me what baggage I can leave behind. I have learned so much about myself and how I can deepen my relationship with my friends.

There is a quote that says, "In prosperity, our friends know us; in adversity, we know our friends."(John Churton Collins).

As a result of my battle with cancer, I have crossed paths and re-connected with so many people. Some from elementary school, middle school, high school, college, my sorority and former jobs. Cancer is not a battle I can fight alone. Opening up and sharing this experience has brought about amazing people that encourage and support me along this path, each and every day (yes, I'm talking about you). I am humbled by the support and sometimes can't believe how people step up and show out.

To all I say thank you. I realize that life goes on for everyone. By you taking the time to send a text message, make an fb post, call, schedule a lunch date or visit with me in my home sends the message that you care and that we are in this together. I am most appreciative.

We are winning this fight. Two more rounds to go and I can envision that this fight will end with a knock out punch!

My Return to Church

Gathered together in His name

Matthew 18:20

I am currently a member of Spirit of Faith Christian Center in Temple Hills, Maryland. I have enjoyed attending the services there for over 7 years and feel as though my walk with Christ has been enhanced as a result of the teachings. When I found out I had cancer, I turned to the church to offer me inspiration and encouragement to fight this battle. Once I began my radiation treatments I no longer had the strength to attend church services. At that point I began listening to and studying the works of Joel Osteen. It brought me great satisfaction. I currently read Joel Osteen teachings each morning to begin my day and listen to his teachings on a regular basis. However, I knew I had to get back into the church and fellowship with others.

I stayed away from the church because of weakness and large crowds. My immune system had already been and continues to be compromised and I did not want to contract any illnesses. However, I longed to be back with my congregation and praise and worship my Lord & Savior. Well guess what? On Sunday, July 14th I prayed and made my journey to church. I prayed that God would protect me from all germs and that I'd have the energy to praise Him! He came through. I thoroughly enjoyed my return to my church home and look forward to attending on a regular basis. Isn't God awesome? Yes He is!!!

A Well-Needed Vacation

I have the best sister in the world! It's hard when people find out that I have cancer. A lot of people don't know what to say or how to act around me. I'm still me, just being a little challenged right now. My sister is one of these people. She always asks, "Are you eating?" It's her way of showing that she loves me and is concerned about my progress. It's weird sometimes because she's my sister and we've been through this so many times with my mom and my aunts. But just like it was different for me when I was diagnosed, it's different for someone whose protected me throughout their life and there's no way they can make this go away.

This past July 4th my sister wanted to take me away to one of her favorite places to help me relax and not think about doctor appointments and chemotherapy treatments. We went to the Outerbanks in North Carolina. It is such a serene place. Although it was a holiday weekend, it wasn't very busy and I was able to enjoy my time there. Now my sister had the chance to really see me eat. The seafood there is so fresh and prepared deliciously. I plan to go back when I've completed my treatments and I am 100% healthy.

They say you can't choose your family. I love my sister and wouldn't trade her for another. She'll never know how much this vacation has helped me get through my last three treatments. This was a well-needed break that I didn't even know I needed until I was there. My next treatment is July 23rd. Although I am not looking forward to it, I know it's one treatment closer to the finish line. I can do all things through Christ who strengthens me (Philippians 4:13).

The Day After

Yesterday...
I woke up at 6:30am, 3 hours before it was time to leave for treatment #9. I took my time getting dressed. I spent some time with God. I felt inspired after spending this time and decided to wear blue for those having dealt with, dealing with, and will deal with colorectal cancer. I felt so good walking into the infusion room. I am winning this fight!!!

I weighed in. I am now 101 pounds. My doctor wants me to get to 110 pounds by the end of treatment. I think I can do that. My appetite is great. All day long, all I do is eat and think about what I'm going to eat next. Poor Mike (he's the cook in the house).

As I found my seat of choice, said good morning to those already there (my parents raised me with manners), and prepared myself for my treatment, my nurse informed me that I would no longer receive the calcium and magnesium medicines. Research has shown that these medicines, when used during chemotherapy treatment, were not effective. Great!!! My treatments would now be three hours instead of four. 

Then the saline and steroid infusion began. No problem. Next, Oxaliplatin and Leucovorin started. It takes no time for these chemotherapy drugs to wreck havoc on my body. I began to feel nauseous within 30 minutes from beginning the infusion. I ate my breakfast, chatted with Mike and the other patients in the room for a short while, watched Serena's tennis match from the previous night, got my pump of Fluorouracil and then I was on my way. As usual, when I got home I took my nausea medicine, got a bite to eat and then slept until the next day.

The next day...
I'm feeling better today. Not 100%, just better. I carry my pump around everywhere I go. I look at the pump conflicted because of the poisons going in my system, but yet it's supposed to cure me. If that's not an oxymoron! But still I have faith that God led me to these doctors to save my life and continue His purpose.

My oncologist informed me on my last visit that the neuropathy would get worse. I think he is right. My fingertips are more sensitive and now I am beginning to feel it in my feet. Prayer warriors, I need you. Let's bind this feeling of neuropathy. Although it may be a side effect of the chemotherapy drugs, it doesn't have to be a side effect that I experience. Thank you in advance for your prayers.

I think I am going to call it an early night and get some rest. I feel a cold coming on and "ain't nobody got time for that."