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Category Archives: cancer fighters and survivors

Resources for Ostomates

This is a reposting of an older blog I wrote. I thought it was a good time to share again in light of a recent question I received from a blog reader.
I was in a conversation recently with a new Facebook friend, Donna, which made we think it was time to revisit the top of resources of the un-insured or under-insured. She shared with me that she was able to get ostomy resources from Banner Home Care.
She called Banner Home Care and asked them if there was anyway they could bill her for the supplies. The gal she talked to said that wasn’t a problem. Then she said she’d send an application for financial assistance and faxed it to her. Donna filled it out and faxed it back and in the meantime my supplies arrived. A few days later she received a letter in the mail saying that she qualified for 100% financial assistance and would be getting all of my supplies for free. She had to let them know when and if her insurance situation changes, but for now, she can get supplies free for an entire year.
Suggestions for contacting Banner Health: As for the financial form, the patient would have to ask for one from their specific Banner Home Care/Banner Hospice located where they are. At the bottom of the web page there is a ‘Contact Banner’ link. There are different contact numbers for all of the different states Banner Health covers. If someone is in Phoenix, AZ is looking for what Donna discovered, the telephone number in Gilbert, AZ is: 480-657-1000. She suggests that you (the patient) tell whomever is answering the phone exactly what your situation is, whether you are uninsured or underinsured and are needing ostomy supplies and would like to apply for financial assistance. She also said the employees seemed genuinely caring and concerned and will do everything in their power to help a person out as best they can.
I also recently received an update from my friends at non-profit organization, The Wholeness House/Osto Group Ladies  “I just want to thank you for all the donations that are coming to us by way of your outreach.  We have increased tremendously in shipments and I know God is using you to assist us in this fashion.~Marian”
Osto Group Mission: To meet the needs of those who have fallen on hard times by providing them with quality supplies and the necessities for living. In the course of accomplishing this task, we will never diminish the value of a person or the potential that they hold. No one will ever be turned away! 877-678-6690

A HAND UP NOT A HAND OUT FOR OSTOMY PATIENTS’ NATIONWIDE Often treatment of colorectal cancer will warrant a temporary or permanent colostomy/ileostomy (an ostomy is a surgical opening to the intestines) which requires a wide range of medical supplies. Ostomy supplies are not a choice; you can’t live without them and the monthly expenses are in the hundreds. With the difficult state of the economy and many people facing job loss and lack of insurance it makes me wonder how ostomy patients are purchasing their supplies. Thanks to this wonderful group of women running the ‘Osto Group’ a non-profit organization that offers ostomy supplies to patients nationwide for those who do not have medical insurance or their insurance doesn’t cover their supplies. One person shared, “When we lost insurance coverage, we felt we were lost. Also, there isn’t an extra $200/mo. in our budget. I haven’t been able to find any meaningful employment for more than 12 months. These unfortunate ones actually use common household supplies and tape in place of ostomy supplies! That sounds bad, doesn’t it? Well this is reality for some”. (Summarized from a testimonial letter written to Osto Group).

HOW CAN YOU HELP THE OSTO GROUP?
1.PRAYER: First we ask for your prayers for the Osto Group so that they can continue to provide this needed support to ostomates  in the United States who do not have insurance or have insufficient insurance which does not cover their ostomy supplies
2. OSTOMY DONATIONS: Osto Group, 15070 Corporate Rd. N, Jupiter, FL 33478 The following items are what Osto Group is looking for in the way of donated material:
  • Hollister Products – Wafers and Pouches – Skin barriers, cleansers and wipes, M – 9.
  • Convatec Products – Wafers and Pouches – Please label with Manufacturers part number if they are out of their box if you can. Skin barriers, Eakin Seals and Stoma Paste.
  • Coloplast Products – Wafers and Pouches – Urostomy Pouches.
  • Nu Hope or any brand of ostomy product, tail closures, sponges, wipes, scissors, bandages, as long as these are packaged intact and in good condition. 3. FINANCIAL DONATIONS: $5, $10 and up no donation is too small! Osto Group, corporate office 4521 PGA Blvd #228, Palm Beach Gardens, FL 33418-3997. Questions Call The Osto Group: 877-678-6690. Since the Osto Group is a 501(c)(3) organization they will provide a receipt for each donation for tax purposes.
4. SPREAD THE WORD ABOUT THE BENEFITS OF THE OSTO GROUP (http://www.ostogroup.org/ 877-678-6690).
Thank you for all of your continued support!
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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Inspirational vistor

I was thinking about a visitor I had after my first surgery when I first had my colostomy (this is going back 25 years ago). I remember a very joyful woman coming into my room and exuberantly sharing that we had something in common. I could barely lift my head from pain and here she was just as happy as can be what could we have in common? It turns out she was a cancer survivor and she wanted to share her experience and encourage me to have hope for recovery. She was, in fact, very encouraging and maybe that brief visit was just what I needed that day.

I retell this story because I recently discovered a Facebook page of a very inspirational woman who reminded me of the visitor I had that day. Barbara, like my visitor, has no prior relationship with the people she visits at the hospital, but she does it out of a compassion for others. To many its inexplicable, but to the people who dedicate their time to visit cancer patients, children and/or hospice patients it’s unexplainable how life changing and rewarding it is.

“Barbara Taylor Vaughan is 89 and in the beginning stages of Alzheimer’s. She started a Facebook page to help chronicle her illness and put a face on Alzheimer’s. Barbara hopes educating others will inspire them to volunteer to help ease the suffering of those with the disease, families, caregivers. She recently shared a post chronically a story of when she belonged to a group that would sit with hospice patients that had no family or friends.” I would like to encourage you to check out her Facebook page and read this encouraging post.

“I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.” ~William Penn

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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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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New Research Developments in gastrointestinal cancers

One of the missions of the Chat With Dee Dee blog is to come alongside other cancer survivors and family members as an outreach to be there for those going through cancer treatment and after care. We also desire to share information and resources from reputable organizations about diganosis, research developments and treatments. The things I share are for informational purposes only not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

New Research Developments 

 

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Maximizing Health Outcomes – Improving Patient-Doctor Communication

This blog post is being authored by me, Dee Dee, and my daughter, Stephanie, also the copy/art editor on the blog. We wanted to help others take a closer look at how to better communicate with your doctor and health professionals during surgery and treatments from the perspective of a patient and family member.

I’m sitting here writing to you trying to recall the initial feelings my family and I faced with the onset of my symptoms that led me to the diagnosis of colorectal cancer. The day we received the news it was so overwhelming. I remember immediately crying and sobbing uncontrollably when my doctor confirmed the diagnosis.  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. 

The Patient-Doctor Communication Gap
It’s difficult to pay attention to the details when you’ve been given a serious diagnosis followed by surgery and/or a series of treatments. 

I was recently in a discussion about a loved one who’s going through a tough time between diagnosis, prognosis and treatment. The reality is we don’t plan for a positive result on test for cancer. We don’t foresee a loved one incurring a life altering medical condition so when it hits us we’re almost always unprepared. Battling chronic pain, being given a serious diagnosis, faced with a series of tests, insurance limitations and treatment options can not only be overwhelming but also very frustrating. We have questions but we’re in the hands of our trusted medical professionals. They know best right?

Patient-family member’s role in improving communication
First step is filling the advocate role to close the communication gap. Often the patient is not in a position to take on the added responsibility of documenting symptoms and researching options. For me, my spouse’s involvement in my treatment and aftercare was critical to my healing. There are far too many oversights that can occur when no one is watching. An advocate can be a spouse, family member, friend, health advocate, case manager, etc. The important point is another set of eyes involved in the process.

Verbalizing your questions and concerns[i]
Sometimes we’re afraid or embarrassed to talk about the questions and concerns in our thoughts about post-surgery/post-treatment life. It’s important to verbalize your questions with your doctor(s) to help them better understand the patient and family member’s perspective and enable them to problem solve and give suggestions to help improve quality of care and life.

Record Keeping/Portable Health Records (PHR)/Health Journal
Keeping a record of symptoms, doctor’s visits and treatments is of significant importance.  Many of you, like me, are embarrassed to discuss symptoms with your doctors or you think it’s a normal part of ageing. It is our responsibility to keep track of our health and to ask the doctor the right questions.

You have a right to request copies of MOST of your medical records
There are a few exceptions to the rule but it is always a good idea to request a copy of your medical records to keep in your PHR/Health Journal Binder.

1. How do I request copies of my records?

Write a letter to your doctor including the following (excerpts from about.com “How to Request Your Medical Records”:

  • your name, including your maiden name (if applicable)
  • Social Security number/ID number
  • date of birth
  • address and phone number
  • e-mail address
  • record(s) being requested
  • date(s) of service (months and years under the doctor’s care)
  • signature
  • delivery option (whether you prefer to pick up, fax, e-mail, etc.)
  • make a point to request a copy of your records at each doctor’s visit.
  • note: there may be a per page copy fee charged (e.g., $0.75 a page). If you have financial limitations and cannot afford to pay for copies of your medical records, make a notation in your request letter that ‘I cannot afford to pay’.
  • NOTE: Diagnostic lab test records, for such tests as blood tests, CT scans, x-rays, mammograms or others, should be requested from the doctor who ordered them, or your primary care physician. In most states, the lab will not provide them to you directly.

Time limitations[ii]
Keep in mind a doctor’s schedule is very hectic so be mindful that you will have a small window of time to ask your questions. I suggest writing all of your questions down and then reviewing the list with your case manager/patient advocate to see if any of the questions can be answered by your support team without enlisting the help of your doctor (e.g., insurance questions, assistance with finding in-patient/out-patient acute/sub-acute facility for rehabilitation, sharing internet information about a disease/procedure, etc.). When you meet with your doctor bring two copies of your dated questions list with you so you will both have a copy and be ready to discuss the facts and be sure to have a pen on hand and extra paper to take note of the doctor’s response (this can later be recorded in your Personal Health Records (PHR).

  • Questions about your diagnosis/symptoms (further clarification what it means for quality of life)
  • Questions about medications and doses and any side effects you’ve experienced
  • A food journal and any significant questions you have about how certain foods effect you

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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HOPE: Sticking to Goals Despite Complications

Since I started blogging I’ve been blessed and have met some very wonderful people. Many of the people you’ll meet in the blogging social media community are very dedicated and driven and can be very helpful getting you noticed. Often they’ll give you suggestions, connect you with like minded bloggers and even offer to write about you on their blog or guest post on your blog. The problem with promises is life can get in the way even with those who have the best intentions. At times we’re all so busy or derailed it complicates the actual delivery and the promise fails to occur.


So how do we prevent over committing and letting others down especially ourselves?

I’ve always been very determined and driven. I believe my determination and will is a huge part of my fight and survival during my treatments and up to this very day. I’m also an extrovert, even as a child I was very high energy and outgoing. My personality is a very big part of my success throughout my life. I may have been an average student but I made sure that I made up for it and I applied myself in every other area to succeed. I was very involved in extracurricular activities. I have a big enough personality that I even joined a cultural club once to be a part of the fun and socializing in the group even though I didn’t speak the language. Let’s face it … I’m fun and enjoy life, in fact, that’s still my attitude today.

Now this is going way back to my youth but I remember this particular day very well. I was only 16 at the time and it was tryouts day for the majorette flag twirler squad. I had been preparing for this day for quite some time. I was a self taught and a very proud dual flag twirler with charisma and flare.  This tryout was very significant since I was aiming for the very important position of captain of the majorette squad. I had spent countless hours learning my routine and boy oh boy I had it down … I was more than ready. The only problem was when I woke up that morning I was in a tremendous amount of pain on my lower right abdomen. Despite the pain I knew the position meant the world to me so I decided not to tell anyone about the pain and go to the tryouts anyway. Probably not my best decision but I was very determined.

I did my hair, makeup and had high expectations that I was going get the captain’s position on the majorette squad. I knew I was good and I was ready to lead. One by one we all went up on the stage to perform our routines and as each girl went up my pain increased with more intensity. When I finally got up on the stage I was hoping my turn would go very fast but by this time the pain was so intense I knew I blew it. To my surprise and delight the band teacher was still very impressed with my routine and even though I didn’t make captain that day I was given the co-captain position. I was in pain but very ecstatic.

When my mom came home from work that night a lump had formed on my lower right abdomen so I decided to fess up and tell her about the pain. My parents took me to the doctor’s office and I was rushed to the hospital for an emergency appendectomy. The doctor told my family that my appendix actually ruptured in his hand when he removed it from me. Wow God’s hand was really with me that day.

I probably shouldn’t have gone to tryouts that day but I’m glad it worked out the way it did because my perseverance gave me the opportunity to do something I loved. I didn’t want to let myself down and I didn’t want to let my team down.

Same holds true with my mission in blogging. I am not concerned with number of connections as I am with real connections. It’s important to me that my stories reach others and encourage and offer hope. I’m also very happy when others share their stories with my bloggers since we all have something to share and you just never know who’s reading and when or what will impact someone and bring them  hope.

I truly believe without HOPE we can’t stick to our goals. Ask yourself this question… Are you being genuine to your goals despite the perception of others? Or have you compromised your mission to write about what’s popular or trending? I hope you’re sticking to goals despite life’s complications.

 Power Versus – God’s Promises:

  • But those who hope in the LORD will renew their strength. (Isaiah 40:31)
  • And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. (Romans 5:5)
  • 21 Yet this I call to mind and therefore I have hope: 22 Because of the LORD’s great love we are not consumed, for his compassions never fail. 23 They are new every morning; great is your faithfulness. 24 I say to myself, “The LORD is my portion; therefore I will wait for him.” (Lamentations 3: 21-24)

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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When Life Gets Messy: How I Handled an Adverse Drug Reaction (Side Effect Neuropathy)

Note: I am NOT a paid representative for the product mentioned in my post, but I am sharing my experience as an advocate to hopefully help others in a similar position.

When I was thinking about this new blog, I thought to myself the title should be “WHEN LIFE GETS MESSY”.

I was out one evening for dinner with my youngest daughter and her close friend and her mother. We were all having a nice meal and enjoying one another’s company. But I felt funny and knew something was wrong so I excused myself and went to the ladies room. I found that I was bleeding excessively and knew immediately it was a urinary tract infection (UTI). You see I am no stranger to UTI’s since this is another side effect I encountered from post-radiation burn. I went back out and whispered in my daughter’s ear that I needed to go to the hospital that I had a UTI and so politely excused ourselves without alarming our dinner companions.First let me back up a little and explain that ten years after my surgery and radiation treatments I discovered yet another effect of the radiation burn, I was diagnosed with lymphedema in one leg (http://en.wikipedia.org/wiki/Lymphedema). I learned to manage this by being a fighter, a survivor, a woman determined to live life to its fullest. I accomplish this by a daily combination of compression pump therapy, leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy.

Back to this particular evening which was about five years ago when I got to the hospital they immediately began to treat me for a UTI, wanting to stop the bleeding which was excessive I was given a strong dose of Leviquin through an IV drip. It was odd because my family thought this might be the drug I took orally a year prior and had a negative reaction in the form of seizures but in the moment we couldn’t recall.

The Levaquin stopped the bleeding immediately but the next day, I woke up paralyzed in one leg. We later realized that this was in fact the same drug that I took in a much lower dose orally and now at a stronger higher dose IV it resulted in a more severe adverse reaction causing Neuropathy in my weakest limb, the leg with lymphedema. It was so devastating to wake up and not be able to stand. The pain was so severe and I screamed and cried for a long time until they regulated my meds.

After several months, I had regained some mobility but due to Gabapentin Rx treatment. It took away a lot of the pain, but still causes increased numbness, instability, and poor balance. I was determined over the last few years to search for the right treatment. It’s a funny thing my daughter actually found this treatment early on when I was first diagnosed but when we asked my doctors and case manager they said there are so many treatment systems that are not FDA approved and they advised me against it.

But I am so pleased that my daughter and I were so persistent. Several months ago my daughter noticed that the Cancer Treatment Centers of America (CTCA) uses this same treatment system which I noted on their site under post-colorectal cancer survivors treatment and neuropathy. The system was still too costly at nearly $2000 plus. The suggestions I found through my research were that this treatment should be coupled with therapy which meant co-pays on top of the initial cost. But oh how God is good. We prayed that he would make a way that would enable me to afford to purchase the system. As we continued to research via the web, read books and forums to our surprise the system’s website had a special offer the price was half price through their Canadian vendor for a limited time. I purchased the ReBuilder Treatment System (http://www.rebuildermedical.com). Since I’ve started using it, I’ve regained movement in my toes, which were previously numb and lifeless. I can now feel temperatures again, and I even walk better at times without my cane though I am still careful! The greatest result from this treatment is that it has virtually eliminated all of the painful neuropathy symptoms. I am so grateful to God for this miracle and for finally gaining some relief.

I highly recommend investigating if you have neuropathy to determine whether or not this treatment is right for you. It is also covered up to 80% by Medicare.

I am now pursuing measures to avoid future poly pharmacy adverse drug reactions. I had a negative reaction to in the past but didn’t realize at the time of my medical emergency. What happened at the hospital may have been avoided if we were able to identify this medication as something I had adversely responded to in the past.

Questions To Ask Your Doctor About Neuropathy (link)
Alternate Treatment Options: ReBuilder System (click here medicare and insurance form Original Medicare pays 80%. If you have Medicare and a supplemental plan, you may be eligible for 100% coverage) 
can help eliminate the painful symptoms of peripheral neuropathy (This treatment worked for me). ‘Canadian vendor’, link to www.ReBuilderMedical.ca Note from the vendor: “The 2407 model offer has a 30 day money back guarantee in North America. Purchasing through our site has become a viable option for those who are unable to get insurance or Medicare coverage, or for those who wish to have the 2407 model, which MediCare does not cover. All orders are shipped from the manufacturer in Charles Town, West Virginia.  In an effort to make the unit more available to those who cannot afford it, we have also been able to reduce the price of the 300 model basic package to about $500.” Please write to me to request special coupon code to save 10% off the purchase of a ReBuilder 2407 system from now through May 1, 2012.

Discussing Side Effects with Your Physician
Another thing I’ve learned are many times doctors aren’t familiar or don’t necessarily agree with all of the side effects listed on official drug brand website.

Its important to document any side effects you have to medications/treatments and make your doctor aware. Not disclosing something to your doctor can be harmful.

Healthcare treatment data mining sites like Cure Together http://curetogether.com/ can give you insight on success of treatments categorized by disease and patient response/outcome to treatments.

You might also referr to reliable sites like http://health.nih.gov for helpful literature.

I had a doctor wanted to prescribe a medication that is now in litigation for sever side effects. Glad I decided against it and found another option that worked well for me with no side effects. You can also referr to FDA medication guidelines found on official pharma rx site. (e.g. Levaquin http://www.levaquin.com/sites/default/files/pdf/Levaquin%20Med%20Guide.pdf#zoom=100)

Today I am so grateful I continue to see improvement because I wouldn’t settle for mediocre. I keep my mind set to live life to its fullest every day! I don’t think about or worry about next week. I choose to live today for today! When I get up every day I ask my God to be my strength and when I can’t walk he is my legs. I want to be the VOICE for those who can’t fight. I want them to WIN like I am a WINNER. LIFE IS MESSY at times but we can choose to clean up the mess when it comes our way.

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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