Maureen’s Story: How my family coped with cancer

Cancer is a jolt to any family’s whose loved one has been diagnosed with it.  

I was diagnosed with Appendix Cancer with Pseudomyxoma Peritonei in 2003. My husband's first reaction was denial.  He argued with the doctor about how this couldn't be true and he listed his reasons for denial.  While observing his reaction, I felt like I was having an out of body experience.  I felt like I was looking down at their discussion as an outsider.  My husband soon realized that, indeed I did have cancer. He and my sons became proactive by researching information on the internet. They discovered the PMP Pals’ Network, which lead me to Dr. Paul Sugarbaker.  Through the PMP Pals’ Network, I was introduced to my Pal Mentor, Mary Anne, who shared so much hope and encouragement with me.

I decided to write all my thoughts in a journal.  I was able to say things in my journal that I would not say out loud.  I faithfully wrote in it every day.  Some days it was mundane happenings of the day, but other days I expressed my thoughts and fears.  I didn't write it for anyone else but me.  I think writing about my feelings helped to keep me grounded.  

I also began a workout schedule to prepare for the big surgery.  I worked out with a trainer two days a week. She noticed when I felt “down” and would provide me with encouragement.

Our family doctor referred me to a wonderful therapist.  I saw her and she felt that I was dealing well with everything that I faced.  My husband saw her separately, as well.  I honestly feel that the care giver's role is extremely difficult and often overlooked.  

When one member of the family has cancer, it’s as if the entire family has cancer.  There were tough days that we shared together as a family. We didn't always get along and agree about everything.  We would have had those kinds of days even if I had not been diagnosed with PMP.

I could not have walked this journey without my husband and my kids.  They gave me the strength to be the fighter. I also feel that if a marriage is strong it will survive whatever is thrown at it.

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org


 
 
Why Some PMP Patients Need TPN for Supplemental Nutrition

Total Parenteral Nutrition, or TPN, is a liquid nutritional formula administered to GI cancer patients temporarily when they are unable to consume solid food during post-operative recuperation, or when they experience an inoperable bowel obstruction, preventing the absorption of nutrition and the evacuation of bowels. If Pseudomyxoma Peritonei or appendiceal cancer patients experienced a bowel obstruction, their physician may prescribe TPN for nutritional supplementation.

In today’s FAQs, two Pals, JL and Chuck, are both experiencing bowel obstructions. Chuck utilizes TPN for his nutritional needs. Julian in approaching a possible total obstruction and is exploring his options for utilizing TPN. He turns to Chuck for answers to his questions.

JL asks: “What does TPN look like?”

Chuck replies: ”TPN is an opaque, white liquid, whereas most of the other IV fluids are clear.”


JL asks: “Does the TPN bag need to be hung on an IV pole?”

Chuck replies: “In the hospital the TPN bag is hung on a pole and TPN is delivered with a big pump, which needs to be plugged into an electrical outlet. 

At home, the TPN comes with a small backpack, which holds the 2 liter TPN bag and a small, battery-powered pump.  I’ve worn my TPN backpack to friends’ homes, restaurants, movies, the theater, the symphony and the ballet with no problems – and no impolite stares. 

When I go to bed, I simply place the backpack on an end table next to my bed.  The connecting tubing is long enough so that I can turn over and change my positions in bed without any problems.”
 
JL asks: “Do you miss 'real' (solid) food?”

Chuck replies: “Initially, I did miss “real” food but I don’t anymore.  I told myself that I’ve enjoyed so many wonderful meals before TPN that I really don’t need any more. 

However, I still really appreciate aromas – from our kitchen, from a bakery, from restaurants. I still enjoy making breakfast pancakes and marinating and grilling meats for my wife, family and friends.”

JL asks: “Can you drink juice or any liquids?”  

Chuck replies: “I do take clear liquids by mouth, including: fat-free clear broth (e.g., strained onion soup, strained miso soup, strained minestrone soup), strained fruit juices, Jell-O, sorbets, Italian ices, plain tea, black coffee, carbonated beverages, and popsicles. I do not drink any dairy products.”
 
JL asks: “Is travel difficult to travel for business or pleasure, with TPN?”

Chuck replies: “Travel is not a problem, though it does take a little extra planning and when making hotel reservations.  You’ll need to have a mini refrigerator in your room, if possible. The security people at airports have been very pleasant and understanding.”
 
JL asks “Must you be tethered to the TPN for 12 hours each night? What if you don’t sleep for 12 hours at a time? Is it cumbersome or difficult to walk around with the TPN back pack?

Chuck replies:” Yes, it’s 12 hours every night but that’s not a problem.  Sometimes I start a little earlier or later, depending on what’s going on that evening. My wife hooks me up to the IV line, and I feel very comfortable going anywhere with my TPN portable backpack and pump.”   
 
JL asks: “Is TPN expensive?”


Chuck responds: “Yes TPN bags are expensive; however, my insurance covers the majority of the costs.

JL asks: “Do you think I should continue to try to eat soft food and delay using TPN unless I need it as a last resort?

Chuck responds:  “This question can only be answered by your licensed healthcare professionals assigned to your specific medical case.

Frankly, I considered TPN as the last resort, when I was initially faced with that prospect, and I resisted getting started. 

However, now that I’m on TPN and know that is provides sustainable nutrition with no problems, I’m a happy camper -- but everyone has to make that decision for themselves with input from their own doctors.”


Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org


 
 
Question of the Day:

CD from the USA asks today’s FAQ:

“Why does my incision feeling tingly?”

“I had CRS with HIPEC a few months ago. I notice a “tingly numbness” feeling along my incision. Is this normal?”

GG responds:

“The "tingly" feeling you describe should be brought to the attention of your surgeon.

To the best of my knowledge (and I am not a licensed healthcare provider) it is not unusual to feel that sensation, either for weeks and months following surgery, or, in some cases, permanently. Nerves were cut during surgery; this may be the cause of that tingly or rather numb sensation.

While these sensations may feel unusual, to the best of my knowledge, they are not dangerous, but should be discussed with your surgeon.”



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org


 
 
What’s Causing my “Oversensitivity” After Surgery?

Cheryl from the USA is recuperating from CRS with HIPEC,  reports that her skin and body feel overly sensitive and is especially to tactile sensations. She seeks answers to the cause of this “over-sensitivity.”

PMP Pals responds:

There may be one or more reasons you are aware of tactile sensitivy and all of them should be explored with a licensed healthcare provider.

Among these reasons are:

Your body’s reaction to medications, including pain medications.  In addition to your prescribing physician, your pharmacist can provide you with detailed information about possible side effects from any medications you may be taking, including OTC (over the counter) medications, supplements and/or herbs.

Post-traumatic stress . Surgery, alone can be traumatic, not only to the body but to the mind/emotions. During the days or weeks of hospitalization immediately following surgery, patients are awakened at all hours of the day and night to have medications administered, bandages changed, injections, examinations, blood drawn and a variety of invasive procedures necessary for post-operative monitoring. Is there any wonder that some patients experience a case of “post-operative nerves?”

Undiagnosed/undetected allergies . Allergies can occur at any age or stage of life. Allergies can be caused by exposure to something environmental, something ingested or a medication. Explore these possibilities with a licensed healthcare provider.

Compromised immune system. Patients being treated for a chronic illness, such as cancer, and those in the midst of treatment, including surgery and chemotherapy, may experience a compromised immune system. Ask your licensed healthcare provider to refer you to professionals who can assist you in strengthening your immune system, perhaps through nutrition, exercise and adequate rest.

Insufficient sleep. Insomnia is not uncommon among cancer patients, especially those recuperating from surgery. Seek methods of improving the quality of your sleep with adequate pain management, and a comfortable bedtime environment.

Stress relief. Do you schedule time to engage in stress relief during the day? What activities did you enjoy prior to surgery and which of those can you enjoy during recuperation? Can you find new methods of stress relief, perhaps even through passive measure e.g. watching a comedy on TV, while you recuperate? Distractions through stress relief, including hobbies, may help de sensitize your body to the periods of over stimulation you are now experiencing.

For more information see the Coping with Cancer  page under SUPPORT at
www.pmppals.org


Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org


 
 
Am I Eligible for SSA Disability Benefits?

PM from the USA asks today’s PMP FAQ:

I am 61 years old, have been treated for Pseudomyxoma Peritonei and am unable to return to full time employment. How do I apply for Social Security Administration disability benefits to ensure approval of my claim?

GG responds:

“Your surgical oncologist, who performed your surgery, or your personal physician will be your advocate in preparing your application for SSA DIB.

First, you must clearly describe to your physician the symptoms that prevent you from returning to full time employment. For GI cancer patients, the most common complaint and inhibitor for returning to full time employment is in reference to digestive and bowel elimination concerns. If you are one of the patients that require frequent “visits” to the bathroom, symptoms of bowel distress may hamper you from returning to full time employment.

Describe this or any other symptom to your physician in detail. S/he will notate your symptoms on your SSA DIB application, including a detailed description of the surgery(ies) chemotherapy(ies) and/or any other medical treatments you have received. This description may include actual copies of your operative, pathology and other reports.

Visit the Financial Aid and Services page on www.pmppals.orgto view a variety of financial benefits that you may be eligible, including SSA, depending on where you reside.

Be sure to note the SSA Compassionate Allowance article regarding expedited review of your SSA application, for particular diagnoses.

These diagnoses include a wide variety of cancerous conditions related to gastrointestinal cancers and may certainly apply to your case.

Do not allow your physician to merely designate your diagnosis as “Pseudomyxoma Peritonei” is the “PMP” diagnosis is rare and is may not be well understood by the eligibility specialist reviewing your application. Request that your physician provide your full and accurate diagnosis description. Common diagnoses among Pseudomyxoma Peritonei patients include:

Mucinous Adenocarcinoma (Appendiceal neoplasm)

Peritoneal Carcinomatosis


Peritoneal Surface Malignancy


For additional information, see the Pseudomyxoma Peritonei page atwww.pmppals.org


Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org
 
 
Physical Fitness for HIPEC Surgery

How do Appendix Cancer patients prepare for CRS with HIPEC? Some, like Chris, incorporate fitness training, into their pre op plans, to optimize their post op recuperation. Chris shares his suggestions in this article!

Name: Chris
Location: North America
Diagnosis: Mucinous Adenocarcinoma of the Appendix
Age when diagnosed: 33
Treatment: CRS with HIPEC

About Chris: Chris is the married father of two children. His eldest child was a six-week-old infant when Chris entered the operating room. His youngest child was born two years after Chris recuperated from CRS with HIPEC. Chris shares his suggestions for preparing for appendix surgery as follows:

“Prior to my surgery I hired a professional trainer at local gym, to guide me through a personal fitness program. My program included working out four days per week.

As a former high school athlete, I appreciated having a trainer to guide and, when necessary, push me! Many of us Pseudomyxoma Peritonei patients wait several weeks, or months, for surgery, therefore, we have time to get into shape! The cost of hiring a personal trainer cost me approximately $1,000 per month. I regretted not asking my surgeon for a prescription for pre-op exercise, as it is possible my health insurance plan would have covered the training, perhaps even if I needed to file an appeal.

Due to the training program, by the time I had surgery, I was in my best shape in ten years! Friends noticed and remarked about how “buffed” I looked! I participated in this fitness plan while receiving systemic chemotherapy. Some weeks, due to the effects of chemotherapy, I delayed my training regimen.

Many of us tend to forget the psychological and emotional benefits of working out! I recently read an article including a longitudinal study that tracked the lives of Harvard graduates. The article noted regular exercise is important for physical health and a long happy life, and serves as a coping mechanism important for maintaining mental health. I can attest the workouts helped remove stress. I remember many days when pumping iron was a metaphor for “beating up” my cancer!

Without insurance coverage, personal fitness training is costly. However, my wife and I had saved money for “rainy days.” When I was diagnosed with cancer, we agreed that the rain had arrived! Spending money on a gym membership, or a trainer, prior to surgery, is worth the investment!”

For more information about fitness visit www.pmppals.org

To communicate with successful “Pals” like Chris, join the PMP Pals’ Network!


The articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers, and are not intended as a substitute for professional medical or legal advice. Patients should seek the counsel of their licensed professional healthcare providers. Copyright© 2012 by PMP Pals’ Network/All rights reserved.