Top Ten Travel Tips for Folks with Chronic Illness

I learn something new each time I venture out with Polly and Behcet’s.  While I get the “You don’t look sick” comment all the time, I’ve learned that the physical limitations are real.  If I don’t listen to my body and pace myself, I will pay for it handsomely with several days in bed or worse.

At the same time, it is important for many of us (especially those with children) to keep up strong appearances as much as possible.  Kids are in tune with our actions even more than what we say.  “Oh, I’m great, really!” doesn’t convince my teenagers anymore.   But if I get out of the house and cheer him on at tennis or volunteer with my daughter’s theatre production, then they feel more certain.

TIP #1:     Rest up A LOT before a trip.  Seriously!  Lay low;  essential errands only.   Let your body get as calm as possible before upsetting it with travel, time zone changes, new foods, beverages, etc.

TIP #2:     Take LOTS of photos, no matter how long you are out and about.  Take pictures of cool buildings, crowds, bridges, flowers, street signs, billboards, people… whatever you see.  They don’t all have to go in a photo album (does anyone make these anymore?).  If you are a facebooker or email your friends, share the pics.  It gives the impression you are out and about a lot longer than you actually are.
I did this during a 3 day trip to Venice and people thought I was all over the place.  The truth?  I had one meal each day and spent 6 hours one day “touristing.”   Probably spent a total of 12 hours “out and about” over the 3 days, but no one would have guessed from all the photos I shared on facebook.

TIP #3:     Don’t be shy about using a cane or other assistive device.  There are a lot of good looking canes and walking sticks on the market now, so don’t be shy!  It serves many purposes:
1.   Gives you something reliable to lean on when covering unfamiliar areas, especially stairs and cobblestone areas.
2.   Enables you to stay out longer.
3.   Keeps your hands off public railings and other things that people touch with who-knows-what.
4.   Signals others that you may need a bit of patience or kindness.
I used my cane in Venice when I did the walk-about with some of the other wives and simply explained that I have chronic conditions that make me fatigued and a bit unsteady;  the cane helps me keep up with everyone else.  I know I wouldn’t have lasted the 6 hour day without it.

TIP #4:     Establish an Opt-In Policy with your travel companions.   Set the expectation that you are content to hang out at or near the hotel while your family/friends do major sightseeing.  You will go with them when you feel like it.  This takes pressure off of everyone.  The others don’t have to limit their plans (e.g., that might take too long and mom will need a rest;  can’t do that because mom can’t climb to the top of the lighthouse).   It also takes pressure off of you from having to ‘suck it up and go’ when you really don’t feel good enough.
When we planned our spring break trip, we explained to the kids that mom is not going to go on many of the adventures.  In fact, we’ll assume that she is NOT going unless she tells us that she IS going to join us.   I get to hear all their stories when we connect at the end of the day – sometimes we meet at a restaurant, sometimes they come back to the hotel.

TIP #5:     Be adventurous on your own!   While the others are out and about, you need not stay in your hotel room.  Get some fresh air and wander outside a bit.  Find a café or park nearby and do some good people-watching.
I love to see people in their natural habitat.  Each new city is like a human zoo to me.  Do they make eye contact / smile / greet passersby?  Are they taking in their environment or wrapped up in their own mental worlds?  Do they smoke?  Do they litter?  Do they spit on the sidewalk?  Are they talking on cellphones or bluetooths?  Do they eat while walking or stop and eat?  Are there a lot of dogs on leashes?  Small dogs or large?   Are there babies in strollers – pushed by moms or nannies?  What type of shoes do the men and women wear on the street?  What are the locals wearing versus the tourists – can you tell the difference?     Is there graffiti?  Posters on walls – for entertainment, political statements, advertisements?

TIP #6:     Plan ahead and check out excursions or sites that are easily accessible.   You may inquire:  are there benches to sit?  Can I get water if needed?  Are there ramps or elevators instead of stairs?  The internet is a wonderful resource (and so is your public library);  you can find out about interesting places to visit that are accessible to you ahead of your arrival.  You may choose to see some things while your companions do other adventures.  It will provide great dinner conversation later!

TIP #7:     Keep some of each of your medications with you at all times.  Don’t leave all them at the hotel/cruise ship or wherever you are staying at night.  You never know what might lead you off the planned schedule, and it is good to have them handy.  This includes a pain reliever and bandages for foot blisters or minor cuts (just in case).

TIP #8:     Keep a list of all your medications, dosages, and times of day for each in your wallet (and near your passport).   This is important for those who travel with you.  Should something happen to you, the handy list will relieve some stress of trying to recall all your meds.

TIP #9:     Keep a list of the diseases, ailments, ALLERGIES, health issues in your wallet (with your medicine information).   It is helpful for emergency personnel to know if you are diabetic, hypertensive, on blood thinner, allergic to medications, etc.

TIP #10:   Bring healthy snacks with you.  Particularly if you have food allergies (like gluten, nuts, lactose, etc.), it is wise to bring some dry food bars and snacks that you can access if the right kind of meal isn’t available when you are hungry.
I find that breakfast bars are my salvation.  I need to eat something with my morning medication cocktail, and I’m hardly “dining room ready” when I take the meds.  Those breakfast bars come in very handy!

Please share your favorite tips and I'll add them to the list.  Safe travels!

Cheers!

Here are some more tips from fellow MPN and Behcet's Travelers:

TIP #11:    Remember to bring your physician contact information with you, along with your health insurance information.

TIP # 12:   Keep a set of all your medical information (Tips 8, 9, & 11) together for easy reference.  Keep it in an envelope marked "Jane Doe's Medical Information" along with a copy of your passport, drivers license or other photo identification.  Again, if you are this organized, you will most likely never need to share this information.  But imagine if something happened to you... having all your info in one handy place would make treatment so much smoother!

TIP #13:   Group tours are a great way to travel.  Once you choose a destination, look into tour packages.  Someone else plans the itinerary and arranges the logistics, you can ride in comfortable buses and learn from knowledgeable tour guides.  

TIP #14:   Pack spare underwear in your carry-on bag.  You never know when you and your luggage will be separated for a day or two.  While you can live in the same street clothes for more than a day, a fresh pair of undies makes life a bit more pleasant.

Myeloproliferative Neoplasms Conference - Day 2 Highlights

All the powerpoint presentations from the conference will be available through the MPD Net listserv sometime in the next week or so (let's give Ian, Antje, and Bob time to get home and back to their computers).

The morning began with Dr. Richard Silver, Director of Leukemia & MPD Center at Weill Cornell Medical College.  He talked about Primary Myelofibrosis and a study with low-risk PMF patients on interferon.  The study showed clinical benefits in 60% of patients and disease stability in 24% of patients.

Dr. Silver is a long-time proponent of the benefits of interferon alpha as treatment for PV and MF.

More info to come in full notes.

Dr. Ruben Mesa shared these thoughts after hearing feedback on the uncertainty and unanswered questions about our diseases:

• We know much more about the cause of the MPN illness than we have ever known.
• We have many more therapies than ever before.
• As you look at the range of cancers, some 300-500 of them, there is probably only 1 that goes away with a single drug.  It is unrealistic to expect that 1 drug will cure any of the MPNs.
• MPN Patients can expect to have many therapies over time.
• All the therapies are in evolution.
• Science is a journey.  It is a muddy road, but we are making progress.  It is a hopeful road.

Stem Cell Transplant Panel

This was really cool!

Four gentlemen who have had Stem Cell Transplants (Rick Posner, Larry Gersh, Ron Anderson, and Julius Dix) and Dr. Joachim Deeg from Fred Hutchinson Cancer Research Center, Seattle answered questions about the experience.   They range from 2 to 11 years post-transplant.

Here are some highlights:

Greatest Challenges:

• Physical:  the chemo can give you sores from your mouth all the way down to the other end -- very painful.
• Huge mental adjustment.
• Maintaining sense of self through overwhelming illness.

Advice:

• Work with your insurance company before hand and get everything figured out and approved.  It is stressful enough without those worries. 
• Try to keep some sort of normal routine.
• Stay ahead with meds for nausea.
• Develop communication mechanism and use a web-based tool like Caringbridge so you don't have to take all the calls.

Graft vs. Host Disease (GVHD):

• Would expect more GVHD with female donor to male recipient, particularly if female had been pregnant; yet relapse rate would be lower (per the Doc).
• Sibling donor makes it milder.
• Patients who acquire GVHD require prednisone for about 2 years; some may need it longer.
• Patients often report they need to take more notes, get tired, have shorter attention span.
• Common issues are dry eyes, dry skin.
• UV light helps with some skin GVHD issues, but prednisone is still the mainline medicine at this time.

Any Big Surprises?

• The day-to-day living after getting out of the hospital;  the amount of time and energy it takes for cleaning the house, prepping food, cleaning the lines, hydration, going out...
• Naive about GVHD.
• Takes a year to feel better.

Research Trends in Stem Cell Transplants:

• Donor Matches -- looking at partial matches to improve the regimens.
• Refine cellular therapy as a vehicle to implant modified T-cells to combat viruses.

= = = 

there's more, but i'm tired... stay tuned!

Making It Through With an MPN

Dr. John Camoriano, Mayo Clinic

Dr. Camoriano had us laughing throughout the conference as the master of ceremonies.  On Sunday morning, he shared eight (8) key principals of being a successful patient and caregiver.  He called them TENACITY principals.

T = Training and Teaching:   learn as much as you can about your disease & share with your doctors

E = Exercise  (single most beneficial thing most can do to improve health) 

N = Nutrition:  eat whole foods, lean meats, olive oil, reserveratrol-laden foods, less milk products...

A = Activism,   Anti-aging:   get involved with the MPN community as you can

C = Calming & Connecting:  keep the limbic system strong, keep laughing, keep connected with others.

I =  Individualization:  personalized medicine is the way of the future

T = Team Building:  be the glue to connect your primary doctor with your haematologist;  connect with MPNers

Y = Yes You Can   “Act As If…”

Know Thyself & Thine Disease.

Become as much of an expert on your illness(es) as you can be.

Bring your physician along with you as your learn:

·       With peer-reviewed literature when possible.

·       With updates at office visits from experts

·       With respect & deference

Exercise Recommendations:

·       Aerobics:  Increase heart rate for 1 hr/day, 6 days a week.

·       Stretching.  Yoga and slow stretches.  15 minutes/day, 2 days per week

·       Resistance.  Weights and bands and calisthenics 2 days per week.

·       Make it fun.

·       Make it a joint exercise.

"You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face.  You are able to say to yourself, ‘I lived through this horror.  I can take the next thing that comes along.”  ~ Eleanor Roosevelt.

Living an Intimate Life with Blood Disease

Teri Britt Pipe, PhD, RN

We got to talk about sex on Sunday!
Dr. Mesa introduced the session by reminding the group that intimacy is more than sex; and intimacy begins in infancy.  In the international survey of MPN patients, Sexuality Problems was ranked #4.

Dr. Pipe

Assumptions:

·       There’s more right with you than wrong with you.

·       You are a unique individual.

·       You are dynamic;  you change.

·       You are on the journey together and alone. 

·       Sexuality and Intimacy “belong” in the clinical encounter, even if it is uncomfortable for the provider.

Where does sexuality reside?

·       Mind/brain – the most important sex organ.

·       Senses – experience what you see, hear, taste, feel.

·       Body – the skin is the largest organ and touch is important.

·       Communication

·       Being – a sense of being in this world.

Possible Impact of Chronic Illness on Sexuality

Performance                                                           

Relational

Sexual Response model by Masters & Johnson

We’ve learned that it’s not as linear as M&J described.

Sometimes the arousal curve gets disrupted by a negative thought…

It’s much more useful and comforting if the orgasm is not the goal.

Mind/Brain

Signals:

Gender Differences
Personal differences – change over time

Mind-Body Approach

Preparation for Conversation with Your Partner

·       Reflect on your own preferences and needs:  what is it like when I feel loved and cared for?

·       Reflect on what your partner may be experiencing.

·       Breathe, cultivate an attitude of appreciation.

·       Listen with appreciation and compassion.

Conversation(s)

·       I feel close to you when ___

·       I like it when ___

·       I want to show you how much I care for you.  Please share with me some ways you  might like me to show you.

·       I would like to try ___  Would that be okay with you?

Limitless Expressions

·       Cuddling

·       Holding hands

·       Eye contact

·       Humor

·       Art, poetry, music, food

·       Phone calls, cards, tokens

Location, Location, Location

·       Keep the bedroom as a place for intimacy and sleep

·       Talking about difficult/awkward things elsewhere

·       Having shared signals for intimacy 

·       Comfort, serenity, peace, belonging

Mindfulness

Paying attention, intentionally

Enjoyment with awareness

Bringing attention to the senses

Asking for Additional Resources

Health care team

“Cuddle Sutra” book by Rob Grader

“Relationships” cd by Bellaruth Naparsek

“Baggage Claim”  -- this illness time is a good time to

To love a person is to learn the song in their heart and sing it to them when they have forgotten.

Supplements and MPNs

Larry Bergstrom, MD

Dr. Bergstrom provides integrative medical consultations for patients.  Integrative medicine is a holistic medical program that addresses the physical aspect of health but also treats the emotional, mental and spiritual aspects within the framework of exercise, nutrition, and stress reduction.

While there is no consensus or recommendations for incorporating supplements into the treatment of myelodysplastic or myeloproliferative disorders, supplements are helpful when people do not eat a balanced diet.

Utilizing food as a source of health and energy.

Emphasis is on food first.

Supplements are used to fill in where food is not there.

He promotes:

Mediterranean/Anti-Inflammatory Diet

Mediterranean Diet Pyramid

Apoptosis =  cancer cells die

Anti-cancer foods:

tomato, garlic, carrots, tea, ginger, soy, basil, rosemary, turmeric/cumin, broccoli, watercress,

Cruciferous vegetables:  broccoli, brussel sprouts, cabbage, …

Any mushrooms must be cooked to get any benefit from them.

Alzheimer protector:  cumin/turmeric

These are the Recommended Supplements Summary  

·       Resveratrol:  500-1000 mg/d  (inhibitor of CYP2D6 and CYP2D9)

·       Indole-3-Carbinol 300-400 mg/d   (replaces broccoli)

·       Turmeric (black pepper (300-100 mg/d

·       EGCG 500-750 mg/d                                   ~3 cups of green tea per day

·       DIM 300 mg/d

·       Vit D  1000 IU/d

·       PEITC    watercress

·       Fish Oil (sum of DHA+EPA) 1000 mg/d   <-  pay attention to the DHA and EPA Omega 3’s

Cancer cells makes lots of reactive oxygen species (ROS) – stimulates cell production.  Watercress suppresses ROS.

A Medical Doctor asks:  What’s making you sick?

A Naturopath asks:  What’s keeping you from being well?

Closing Session:  Mindfulness Meditation

Teri Pope

Mindfulness Meditation

An awareness of moment-by-moment experiences that arises from intentional

Mindfulness Based Stress Reduction (MBSR) by Jon Kabat-Zinn at U-Mass Medical Center

Attitudinal Foundations:

·       Non-judging

·       Patience

·       Beginner’s mind

·       Trust

·       Non-striving

·       Acceptance

·       Letting go

This is an effective tool in leadership. 

Resonant Leadership (Boyatzis & McKee, 2005)

Healthy Mindfulness Practices

·       Breath awareness

·       Positive emotion/relive a positive emotion

·       Mindful eating:  look at your food, notice the texture, taste it, chew it, enjoy it before you swallow; what would it be like if I did every meal like this?  Think about all the hands that brought this to you.

·       Kindness tracking:  those that have come to you and that you’ve extended to others.

·       Gratitude practice:  even with your to do list

·       Gentle movement: 

Please Note:   These are ROUGH notes.  A more complete report will be written when the powerpoints are made available and my mom's notes are combined.  I'll make them available in a PDF document.

Myeloproliferative Neoplasms Conference - Day 1 Highlights

More than 200 cancer patients, supporters, and physicians/researchers gathered at Mayo Clinic Scottsdale this morning at 8 am to begin a lively conference about the state of knowledge and treatment of the Myeloproliferative Neoplasms -- Essential Thrombocythemia, Polycythemia Vera, and Myelo Fibrosis.

Dr. Ruben Mesa opened the session and welcomed everyone and reminds us that this conference is because of Joyce Niblack.  Her husband Bob carries on her work through the CMPD Education Foundation with this Biennial Conference.

It will take some time to prepare proper notes from the conference, as the presenters had visual presentations and talked quickly.  When I get all the information together, I will post a complete written report.

Here are a few nuggets from today:

The hematocrit that feels best for you is where you should be.   While some people feel good at 42 or 45, others may need it lower to feel good, like 38 - 40.  Don't let your doctor get stuck on a prescribed number if it doesn't feel good for you.

Don't worry about tracking your JAK2 allele burden over time;  we don't know that it has any clinical relevance.  All the drugs today inhibit the JAK2.

JAK2 inhibitors are unlikely to eliminate the disease.

Whole exome sequencing to identifyMPN alleles and gene sequencing is becoming more affordable.
Soon there will be a lot of data; they will be able to learn to identify what genes cause the transformation to leukemia.

In your genes:
2 copies of JAK2 => PV
1 copy of JAK2 => ET


Future in drug therapies:  combine drugs in rational combinations to facilitate next level of clinical trials

Prolonged use of interferon can reverse fibrosis in the bone marrow (does not cure the disease).

Help for Pruritis (itchy skin):

• JAK2 inhibitors are good.
• Interferon is better than HU.
• UV narrow band B works 70% of time (see dermatologist)
• Weight wraps (prednisone in a wrap) (see dermatologist)
• Aprepitant, an anti-emetic, works on the Substance P

Formication:  the sensation of ants crawling on your body.

Hematopoietic Cell Transplantation (HCT):
The only treatment that has potential for a cure for MPNs is the stem cell transplant.

Pegasys (Pegylated Interferon) is more potent than regular Interferon-a.  The dose is not so important as the duration.  The effect is probably due to your own biologic abilities.

Standard practice regarding Phlebotomies:  no more than 4 per year.

If you are going to get a splenectomy, go to one of the half dozen surgeons who have done the procedure on MPN patients.  Removing the spleen has real risks:  clots in the area;  5-6% mortality (similar to open heart surgery).

When to have another Bone Marrow Biopsy (BMB)?  only if concerned the diseased has progressed to Myelofibrosis.


That's all for now!