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Category Archives: Cancer Survivor

Colorectal Cancer Awareness Month March 2012

 If more than ½ of the diseases are preventable (diet, lifestyle, testing and early diagnosis), why aren’t we taking action?

First I WAS TOO SCARED: If I only knew signs of irregularity like bright red spots or dark “tarry” stools was a sign of blood in the stool. I didn’t notice the problem until I was literally bleeding with each bowel movement. This went on for quite some time and I was too embarrassed and too scared to go to a doctor.
Then I was TOO SCARED NOT TO SEE A DOCTOR:
The pain was so severe like a piercing knife through my spine I knew something was wrong. My gynecologist said to me the blood was too excessive and was going on for far too long and was certain it was not related to my nerves. He gave me the name of a proctologist to make an appointment for a colonoscopy and that’s how they found the polyp. As a result, my surgery warranted an irreversible colostomy. After enduring 22 radiation treatments only lasting 22 seconds each session, this surgery lead to an ileostomy, due to post-radiation burn and other post-surgery complications.  My doctor told me if I would have only come to him when the symptoms first occurred he could have removed the polyp and we would have avoided all the rest. If only there was a recall button.

 

TAKE ACTION, ask your primary care doctor for a Fecal Occult Blood Test (FOBT)[v] which can detect or prevent cancer long before the symptoms occur. Make your health a number one priority. You’re worth it and your family and friends are worth it!

If you are age 50 and older the prevent cancer foundation recommends the following screening[iii]:

  • Colonoscopy: Every 10 years
  • Virtual colonoscopy: Every 5 years
  • Flexible sigmoidoscopy: Every 5 years
  • Double-contrast barium enema: Every 5 years

Screening intervals for tests that mainly find cancer:

  • Fecal occult blood test (FOBT): Every year
  • Fecal immunochemical test (FIT): Every year
  • Stool DNA test (sDNA): Ask your health care professional

My body had brought me to a point that doing daily activities became too difficult because of the severe pain. I urge you to please take action and control of your health. Regular screenings will greatly increase the early detection of colon polyps which can ultimately SAVE your life!

With love and God’s Blessings,

Dee Dee Email Me: littledeet@yahoo.com E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages)stephanie@gccrepair.com (who happens to be my daughter).

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Let’s help each other figure it out together

Honor and Privilege starts with using the gifts and ones experiences in life to help others.

If the most effective tool in medicine is communication, I believe starting and continuing the conversation about prevention is key. After all, there’s no recall button on cancer.

What an honor and privilege to have the opportunity to speak at the Luke Air Force Base in Glendale, AZ. I’ve been invited today March 7, 2012 to share my colorectal cancer survivor story to raise awareness and educate attendees regarding colorectal cancer and prevention.

I pray that sharing my real-life experience might inspire someone to get screened.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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posture speaks volumes

It’s interesting how clearly body language communicates our response to what someone is saying or to a situation.

Dee Dee – Although it wasn’t communicated verbally, I knew the news about my diagnosis wasn’t what I wanted to hear. The doctor came into my room after my colonoscopy exam and stood at the foot of my bed with his head drooped down. His body language said it all. The doctor and I had hit it off from the first moment I met him. Those who know me can tell you that I love people and make friends very easily. So no … it wasn’t strange that I would make a friend in my proctologist believe it or not. To make delivering the bad news easier on him, I said to the doctor, I have cancer don’t I? He was still looking down and shook his head yes. I immediately cried, no sobbed uncontrollably. He continued to talk, but I don’t remember one word he said. Just about everything was racing through my mind at the time. I thought I would die. My children… how would they handle the news? Finally, I thought I heard a voice saying wait listen to what I’m saying … it was the doctor saying it’s not over its operable. I finally stopped sobbing and started to listen.

Stephanie – I watched a video this week on the topic of Minimally Disruptive Medicine by Victor Montori, M.D., Mayo Clinic http://youtu.be/flcRKdoaiVk. In his presentation, he spoke about the importance of doctor’s picking up on queues that patients give with their body language. Doctor’s often become frustrated when patients don’t comply with their medical advice and/or fail to follow prescription guidelines and or referrals to specialists. Lack of compliance is usually not a result of laziness or lack of esteem for their professional opinion. The truth is that patients often face a number of external disturbances that affect their ability to follow instructions from their doctor.  The disruption in the treatment plan can relate to domestic roles, financial burdens, inability to take that much time off of work, and/or limited literacy on how much (what dosage) and how frequent (what time and how often) they are meant to take their prescription during the day.

Dr. Montori’s presentation using a fabricated patient’s case was very astute. In his message, domestic responsibilities (his family was depending on him to carry the load) were the cause of non-compliance. You see his daughter had recently experienced a loss and moved in with him and his wife bringing her three kids along. He had an obligation to work and carry the financial burden. In order for him to comply with the doctor’s orders a number of things would need to occur. He would need to get a ride to a dietician, take off of work, see an endocrinologist about his obesity and high cholesterol, he needs to avoid salt, fats, carbs, he needs to take and manage prescriptions for diabetes and hypertension which make him dizzy and depressed. He needs to ask his wife to check the condition of his feet because he’s obese and can’t see them properly. He also needs to check his sugar. He has lower back pain, neuropathy and should be evaluated by a podiatrist. Treating these symptoms means more time off work and the patient couldn’t afford to do this. He is in pain all the time and he can’t sleep. His work load is increasing. He has deadlines at work and has to take work home to perform and keep his numbers up. He’s worried about his company going under. If his company fails, he will lose his insurance and likely go into debt. If he’s not able to pay his mortgage, he’ll eventually lose his home. Unfortunately, the program the doctor has prescribed doesn’t FIT into the context of all that is going on in this patient’s life.

When the patient finally returns to see the doctor, non-compliance is interpreted as failure, laziness or non-cooperation. The doctor does not recognize all of the surrounding circumstances, but identifies the breakdown as a lack of effort on the patient’s behalf.

Dr. Montori’s suggestion to adopt a more realistic treatment plan to fit the patient’s lifestyle. Instead, the doctor typically intensifies the treatment regimen when faced with non-compliance – adamantly insisting the patient needs more treatment. As you know, this leaves us, the patient, shifting towards self-management of our care. As patient’s we often frequently go to other patients to ask for help. After all, they can relate to our point of view and share what’s worked or hasn’t from their own perspective.  Dr. Montori suggests ‘minimally disruptive medicine’ as a needed change for the future care coordination. By measuring key areas that help focus to turning towards the goals that matter : burden of the treatment; coordination of care; comorbidity (presence of one or more disorders/disease) in clinical evidence and guidelines; and prioritizing from the patient’s perspective.

I will watch with great interest and hope more doctors will adapt to treating patients using Minimally Disruptive Medicine.

 
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Posted by on February 9, 2012 in Cancer Survivor, Diagnosis CRC

 

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Living with Lymphedema: How it impacts life and what you can do about it now

Immediate Onset of Symptoms
And like that, about 10 years after my colorectal cancer surgery a new side effect developed. I woke up one morning and my leg was swollen like a balloon. Since it was instantaneous we didn’t even consider it being related to my cancer surgery or radiation at that time. I remember it was summer and I was coming home from a weekend in the mountains. I recall thinking I must have been bitten by a spider, but, when the swelling subsided we thought it had resolved on its own.

M
y 1st Diagnosis
Later that summer we headed down the shore to enjoy time at the beach. It never happened before but something about the sand touching my foot it became immediately irritated and my leg became very red and swollen and achy. We decided to go to the emergency room and they examined me and the first diagnosis I received was cellulites. There is lack of awareness and understanding about secondary lymphedema. I was never educated as a patient that I might experience an immediate onset of symptoms in secondary lymphedema. If I had been informed about the symptoms of the condition I would have been properly diagnosed and treated early on. However, since I wasn’t aware of this side effect it was many years before I started receiving treatment for lymphedema.

Living with Edema
During the early stages my leg was still manageable; when my leg would swell and/or ache I would simply elevate it until the swelling would subside. It never really hindered my mobility in any way during the early years.

I remember my youngest daughter was still in grammar school at that time. I have so many fond memories of that time. I was the President of the home school association and for a number of years I was still very active despite the swelling. It was interesting how it didn’t slow me down. I know God gave me the strength to continue to have the energy and ability run at a time when my daughter was young and needed me. It really warms heart when I think of those times and coming alongside the others in the home school association. Some of the great projects we accomplished as a group were so rewarding. I share these stories to add emphasis on just how active I was during the early onset of lymphedema. As some of you might have realized by now I’m not shy and I don’t mind using a little chutzpah[i] when necessary ([i] chutzpah is a Yiddish word for assertiveness. Every now and again I like to throw in a Yiddish word I learned from my coworkers and customers during my many years as a hair stylist). I was told it was unheard of before my term as President of the home school association, but when I became busy at the school with the number of activities and fundraising events I thought to myself I needed my own office at the school. I chuckle when I think of this memory. So I scouted the school and set-up my H.Q. in one of the vacant offices. I remember the principle being taken aback that I had occupied an office space, but she never did ask me to leave (smile). My team and I had been very involved in fund raising for the school and I know that administration and teachers had truly appreciated our help. We did a variety of events from fashion shows, dinners, tricky trays and we even did a magic show once where the magician released doves off of the stage at the end. Quite a show! These were truly great times and fantastic way to raise money for our non-profit private school. I really believe God gave me those experiences so I would have these skills to later use in my ministry.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 

Years Later I Received the Diagnosis – Lymphedema
By then, as my leg continued to swell and tighten and felt heavier and became achier, I decided to seek another opinion. I finally saw a doctor who took one look at me and said yep you have lymphedema. Honestly I don’t recall what tests he performed at that time but I do remember that I started to get specialized help from that point forward. As a result the new diagnosis, they sent me for specialized physical therapy for lymphedema. This included lymphatic massage, leg wrapping and I was fitted for a compression stocking. My case manager helped me to order my pneumatic compression pump which they also used in therapy so I would have a way to continue with treating my leg on an ongoing basis.   

So What’s Lymphedema Anyway?
I’ll use excerpts from a combination of resources I found to accurately describe what it is and how the lymph system works.

Excerpt from American Physical Therapy Association (APTA), “The lymphatic system collects excess fluid and proteins (lymph) from the body tissues and carries them back to the bloodstream. Lymph is moved slowly through larger and larger lymphatic vessels and passes through small bean-shaped structures called lymph nodes. Edema, or swelling, may occur when there is an increase in the amount of fluid, proteins, and other substances in the body tissues. It’s also known as lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. – From Wikipedia. Statistics indicate, a conservative estimate, that there may be 1-2 million people in the United States with some form of primary lymphedema and two to three million with secondary lymphedema.

What are the Causes of lymphedema? In cancer patients several leading factors of secondary lymphedema is the result of radiation damage to the lymph nodes and/or the lymph system and/or scar tissue.

What are the symptoms lymphedema?

  1. Unexplained swelling
  2. Unexplained aching
  3. Heaviness in the limb (for me when my leg swells it feels like it’s in a cement block)
  4. Tightness and weakness” 

What Can I Do Now If I’m experiencing These Symptoms?
Unfortunately there is no cure for lymphedema, but it can and should be treated to avoid further complications as early as possible. I didn’t know about the treatment options available at the time I was diagnosed so it’s important to me to share this with others.

The Mayo Clinic gives an outline and explanation of methods used to properly diagnose lymphedema condition. “The doctor will discuss your condition, examine the limb for swelling and redness and measure the limb. Doctors with special expertise in diagnosis and treating lymphedema may perform some of the following tests:

  • Computerized tomography (CT) scans. A CT scan produces a series of X-rays to create a detailed image of your body. Your doctor may use this test to see sections of the lymphatic system that may be blocked (obstructed).
  • Echocardiogram. An echocardiogram uses sound waves (ultrasound) to produce detailed images of your heart and blood vessels. An echocardiogram helps determine the size of your heart, how your heart valves are working and how well your heart is pumping. Your doctor uses the echocardiogram to detect heart or blood vessel problems, including obstructions in blood vessels.
  • Genetic tests. Genetic tests may be performed to test for congenital lymphedema (lymphedema present at birth).
  • Lymphoscintigraphy. In this test, your doctor injects a radionuclide dye under your skin to look at the flow of lymphatic fluid in your limbs. Your doctor scans you with a machine at several time intervals, which shows the dye traveling through your lymphatic system and lymph nodes. This test reveals blockages in your lymphatic system.
  • Magnetic resonance imaging (MRI). An MRI scan uses magnetic fields and radio waves to create detailed images of your body’s tissues. Your doctor may infuse a contrast agent into a vein in your lymphatic system to see your lymphatic system more clearly on the MRI.”

Banner Health lists the following Treatment Options:

  • “Manual lymph drainage massage to release protein molecules from the tissue and move them along with the excess fluid into the lymphatic capillaries and out of the limb with a noninvasive, technical, therapy technique.
  • Compression bandaging of the limb to provide a firm external non-elastic support to tissue, which acts as a counter force to muscle contraction and, thus, promote lymphatic pumping during even the slightest muscle contraction.
  • Comprehensive fitness program, including flexibility, strengthening and aerobic activities to enhance the lymph drainage.
  • Lymphedema education: Review key points for good health while living with lymphedema.
  • Pneumatic Compression Pump A pneumatic compression device such as the lymphedema pump consists of a garment or sleeve that is wrapped around the affected limb, and a pneumatic pump that inflates the sleeve with compressed air. The sleeve is inflated and deflated intermittently at varying intervals and pressures.”

I’m always exploring new ways for managing my Lymphedema treatment. More recently I’ve started using a brace on my ankle to provide better support. Secondary lymphedema can weaken the muscle tone and strength over time and a little support can be helpful. I’m also exploring the C-Boot Elastic.  This is the first mobile intermittent pneumatic compression (IPC). Over the years my mobility has decreased especially in the summer months due to the humidity the swelling increases and the leg becomes heavier and achy. Lymphedema weakens the muscles making it difficult for me to support my body weight especially when the swelling increases. I brought the information to my primary care physician; however, since it is not her area of expertise she wasn’t able to measure me or write a script for the boot. I’ve yet to find a doctor who specializes in treating lymphedema to request help with measurement and ordering the c-boot. The cost is in the upwards of $2K so this is still a work in progress for me.

Another great resource to plug into is The National Lymphedema Network (NLN) http://www.lymphnet.org/, send an e-mail: nln@lymphnet.org  or call their Hotline: 1-800-541-3259. The site offers a variety of resources for both the patient and doctor. You can search for treatment or support groups, find a pen pal, and learn about clinical trials and much more.

My friends please write to me if you are feeling or experiencing something similar.  I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you.  Please send me an email or reach out to me via Facebook or Twitter.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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References:

http://www.oncologypt.org/mbrs/factsheets/LymphedemaFactSheetFinal.pdf

http://en.wikipedia.org/wiki/Lymphedema

http://www.lymphedemapeople.com/thesite/Arm_and_Leg_Swelling_After_Cancer.htm

http://www.mayoclinic.org/lymphedema/diagnosis.html

http://www.bannerhealth.com/Locations/Arizona/Banner+Desert+Medical+Center/Programs+and+Services/Rehabilitation/Lymphedema+Treatment.htm


[i] chutzpah a Yiddish word for assertiveness

 

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Surgeon’s encouragement to share my health story

UTI, Post Radiation Therapy Side Effects

One of the side effects I deal with from having had radiation treatments for colorectal cancer are reoccurring UTIs.  I was faced with another very persistent UTI that landed me in the hospital Thanksgiving week. I was very weak and thank the Lord that this mercy brought me home on Thanksgiving day to enjoy a wonderful meal cooked by my daughter. It was the best turkey I’ve ever eaten, those of you who’ve spent time in the hospital on holidays know what I mean.

Once again I think we need to be better at listening to our bodies especially when it comes to recurring symptoms that we know we will face intermittently. I had been doing too much the week prior a lot of driving and running around. I missed eating on time and sticking to my regimen of drinking enough fluids. This may have contributed to the severity of the UTI. Sometimes we need to be wise enough to slow down and not push ourselves beyond our limitations; however, we must always LIVE above our limitations in our mind and spirit. Live life-like everyday is the greatest blessing and gift because it is!

Blockages, living with an Ileostomy Dealing with Radiation Therapy Side Effects
As I’ve said before  in earlier posts for many years I was in and out of the hospital with blockages caused from food I could not digest. A contributing factor to this is the adhesions caused from multiple surgeries if they shift and if I eat to big of a portion of food or eat something I have a hard time digesting I can end up with a blockage.

Well that happened to me this week. I have been eating too much Italian bread and maybe too big of a portion of my meals collectively that I ended up with a blockage that couldn’t be resolved by coconut water or any of my other methods. I am so grateful to report that I was released yesterday and I’m recuperating and taking my time to work back to eating solid diet again. God is so merciful again. The surgeon I met with was very encouraging and encouraged by my attitude; he said please continue to share your story it can help so many people who are in a similar position.

If you’ve ever experience a blockage with an ileostomy, you will know the pain involved in the food being backed up and not being able to pass through the ileostomy. If the blockage is severe, it can cause you to vomit your food and bile.

It is difficult to adjust to life with anything new, but it can be done. Having an ileostomy is quite different from a colostomy. When I first had the colostomy I could eat most of the food I was used to eating.

However, an ileostomy was quite different it really limits the amount of food (selection and quantity) that I can intake. Remember I’m working with my small intestines only. Some of the most nutritional foods that are good most people (vegetables, fruit, fiber…) cannot be easily digested by many people with ileostomy though all cases are different.

Eat small meals, drink plenty of fluids frequently

It is important to eat small meals frequently throughout the day as the ileostomy never stops working so you can easily become dehydrated and have an electrolyte imbalance. I know this from experience. The waste out-put with an ileostomy is more liquid then the paste out-put that a colostomy produces. I had to be very careful ensuring I have enough fluids and  in order to get the necessary nutrients I would lack from not being able to eat vegetables and fruit etc I learned to take 1-3 Ensure Plus a day. I also drink Gatorade to replenish electrolytes lost from having an ileostomy. Electrolyte imbalance can include loss of appetite, drowsiness, abdominal cramps and faint feelings. Seek medical help immediately! While most people should avoid salt I need to take an extra serving of salt to put back all that is lost from the fluid out-put of an ileostomy. For quite a while in addition to table salt I had to take salt tablets. Consult your physician about the proper amount your body requires. Taking pills are difficult too because even a pill can cause a blockage in the stoma so I have to crush all of the medications I take which I will review in a later post.

No life isn’t always easy but it sure is good to be alive! Live in the present moment and be grateful and seek joy and find ways to bring joy and help to others in need.

If you are feeling or experiencing something similar, I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you.  Please send me an email or reach out to me via Facebook or Twitter.

TAKE ACTION, ask your primary care doctor for a Fecal Occult Blood Test (FOBT)[i] which can detect or prevent cancer long before the symptoms occur. Make your health a number one priority. You’re worth it and your family and friends are worth it!

Until next time.  Luv you all!

Dee Dee

 Psalm 91:2, I will say of the Lord, He is my refuge and my fortress: my God, in Him will I trust.

Prayer I say, I proclaim, I confess that You, God, are my refuge and fortress.  My trust is in You alone.

 
 

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Love Your Body (Haves vs. Have-Nots)?

We read about body image and how we’re meant to love the skin we’re in. However, I haven’t read many articles about how body image impacts those facing post-cancer and post-raditation/chemo side-effects.

We’ve become more sensitive to those struggling with body image; however, what about those struggling with physical limitations. Can we be thankful for our bodies? How do we beat body image issues related to our limitations resulting from cancer?

What’s Driving Our Perceptions

The tendency is to view our body image through the eyes of what media might suggest as being beautiful. We focus on the ‘have-nots’ instead of what we have. We struggle with self doubt when we wake up and look in the mirror every morning.

Bottom line

We must remind ourselves this time was not promised to us. It’s true each day is a gift so let’s do the best we can with what we have by using all we have. Remember a time when pulling through a surgery or treatment was the most important goal. Now walk humbly and seek love and kindess towards others and also love and be kind to yourself.

We’ve all enjoy singing along to the popular lyrics from the song originated in the 40’s “You’ve got to accentuate the positive Eliminate the negative Latch on to the affirmative Don’t mess with Mister In-Between”.

The pertinent message conveyed in the song is still relevant to this day. Enhance the positive features, personality traits and gifts that you have going for you.

If we allow our thoughts to mess around with “Mister in-Between” we’re making an active choice aren’t we? I believe we are choosing to focus on the ‘have-nots’ instead of the beautiful ‘haves’ … the gift of LIFE!

You are beautiful my friend, you are fearfully and wonderfully made (Psalm 139:14)!

Haves or Have-Nots ..which side are you on?

 

Call to Action for Ileostomates: Share Nutrition and Recipe Tips (If not us, then who?)

Let’s Partner Together to Share Nutrition and Recipe Tips 

Hi Friends,

Some of my more popular blog posts have been on the topic of Ileostomy nutrition (Ileostomy Nutrition: What can I eat after my surgery? and Having an Ileostomy and dealing with ER visits resulting from dehydration

I received an e-mail recently, from a new ostomate, seeking feedback from fellow ostomates on nutrition, recipes and wellness tips that work well for them based on personal experience. Because my blog posts on the topic of ileostomy nutrition have received positive feedback, I thought it was a wonderful idea to try and solicit the input of other ostomates to develop a collaborative blog post on this subject.

When you see a ‘Call to Action’ that is inspiring and/or thought provoking, how do you respond? If you’re anything like me, your inspired and feel a sense of urgency that something must be done. You might say to yourself that someone with more education, ability, expertise, experience and connections will be the likely candidate to take action. I often wonder what qualifies me to write, inform and inspire others. After all, many others, like me, have encountered cancer and have had several surgeries, radiation/chemo and have even encountered post-treatment side effects and live. What is it that qualifies me?

If not us, then who?

Every significant vision, product or concept first starts with a need, spurred by a desire that is initiated and finally ignited by an individual’s response.

The famous quote from nobel laureate, Sir Alexander Fleming. “One sometimes finds what one is not looking for”.

His research during his military stint inspired him to develop a natural antispectic enzyme which years later led him to stumble on the discovery of penicillin. The need to treat bacteria infections, followed by his persistence and intelligence led to one of the great discoveries in science and medicine. What if he wasn’t persistant in  his research?

Statistically, I’m not educated, connected or experienced enough to make an impact that creates change and hope. However, what I do offer is a willingness to respond, a desire to help, and my personal experiences and that, to many, speaks volumes. Some observers might say you’re unlikely to have a significant impact, but you’re living a legacy anyway!

It brings to mind Amos, a farmer and prophet from a small town outside of Jerusalem, was an unlikely choice for a spokesman for the Gospel. Amos didn’t measure up by any means according to the qualifications expected to carry during those times; not only was he a blue-collar worker, but he wasn’t the son of a prophet which is usually the case.

So what should we say qualifies us? Chuck Swindoll said it well, the Power of God is the only clout you need!

How can you help? Share your ileostomy friendly nutrition tips, recipes and restrictions list.

 

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