Thursday, December 27, 2012

Thank You!!

Someone was nice enough to nominate my little blog for this. Don't know what it entails, but please vote!!! Thanks!!! I have been asked how to "vote" for my blog. Apparently you just type your email address in underneath the gold medal (in the white line area) and then hit the "endorse me" green button next to the "thumbs up". Thanks again!!!

Tuesday, November 27, 2012

Wrap It Up!! Keep That Incision Dry!


Providing useable hints and tips for cancer survivors and their families.  That has been the goal of my little blog.  I can blather on all the live long day, but the absolute best tips come from YOU!!!

This is a great tip from the beautiful Carol who lives by the sea in beautiful Maine!!!

Do you have a brand spanking new porta-cath?  Maybe you're dying for a shower and your doctors and nurses don't want you to get the incision wet?

Do you have a post-op surgical incision that you aren't supposed to get wet yet?

Perhaps you have a drainage device or external catheter that you don't want to get wet while showering?  Or a dressing of some kind that you need to keep dry.

Carol would like to share her favorite new product to help keep some of those things dry while showering....






That's right.  Glad Press'n Seal!!! 

As someone who never cooks, I will tell you that plastic kitchen wrap has always befuddled me.  I find that most of it doesn't stick no matter what side you try to wrap or press it on. Whenever I put it around a bowl, it just hangs there doing nothing.  It never sticks to what it is supposed to.   The only thing it seems to stick to is itself.

My sister in law has used Glad Press'n Seal and I have to say it actually grabs on to whatever you are trying to wrap up in the kitchen.

Per Carol, it also works to help keep that dressing dry.  She keeps a roll in her kitchen and now one near her shower!

Apparently it has just enough "sticky"-factor to keep it in one place while you are bathing.  Also, if you have an abdominal wound, you could just roll this right around your waist like a plastic corset!

Here you can see, it is a little cloudy and Carol says the texture is perfect and easy to grab on to.

Most importantly....it keeps everything you need to keep dry in the shower, DRY!!!



 


If you use Emla cream on your porta-cath (to numb it up before they access it)  and you don't have any little plastic bio-occlusive dressings left, I bet this would work perfectly.

So, there is Carol's tip!!  Cheap, easy, works great!!

Whether you are wrapping a sandwich or a wound dressing, apparently this is a great product!!

Hope it helps!!

Thank you Carol!!!





Beautiful Carol from Maine!!

Sunday, November 25, 2012

The White Blood Cell and Exercise-Anecdotal Evidence


There are plenty of studies and articles out there that support the idea that moderate exercise during cancer treatment is beneficial.  We know that it helps combat fatigue in the cancer patient.

But there are not a lot of articles out there that specifically address if exercise can increase your white blood cell counts (WBC) during treatment.   Many articles speak to the role of exercise in strengthening your "immunity", but not specifically in regards to elevating your WBC. 

So here is what we in the business call "Anecdotal Evidence".   Anecdotal evidence is when you have some information that has not been backed up by years of studies, or has only been studied in small groups or populations.   Usually in the medical world we base what we tell you on evidence from research that has already been performed.  Every article you read will refer you to a research study or supporting article on which the current article was based.  Some bibliographies in a medical journal can go on for pages and pages.

But since this is my blog and not a medical journal, I will share with you some "anecdotal evidence" from a couple of fabulous survivors that I know.

These ladies found that their chemotherapy regimens were dropping their white blood cell counts, as we all know that they do. (See my previous blog posting for information about white blood cells in general:  http://www.omgihavecancerwhatdoidonow.com/2012/04/neutropenia-and-febrile-neutropenia-huh.html).

Several times these patients had to delay having their chemo for a week until their WBC increased.

After increasing their daily exercise regimens, they noticed that they had subsequent WBC elevations and did not have to have their chemo "held" or delayed due to low WBC counts.  This happened several times.  They hadn't changed any other variable from before.

Many times as health professionals,  we might not "catch" something like this, because we don't draw blood tests daily.  We usually only draw blood once a cycle or twice a cycle depending on the drug regimen.  These women had their blood drawn a day or two after exercise increases. 

White blood cell amongst red blood cells

The moral of the story?  You can do your own search of the literature (hey, it's Sunday and I'd rather be reading something else besides the history of the WBC!!!!).  Or, you can try it yourself!




Here are some links for articles about exercise and white blood cells:

http://www.livestrong.com/article/386072-elevated-white-blood-cells-after-exercise/

http://www.livestrong.com/article/480886-wbc-count-during-exercise/

http://www.cancer.org/treatment/survivorshipduringandaftertreatment/stayingactive/physical-activity-and-the-cancer-patient

http://www.pps.org.pk/PJP/3-2/12-RashidaBhatti.pdf

http://www.nlm.nih.gov/medlineplus/ency/article/007165.htm

http://health.usnews.com/health-news/family-health/heart/articles/2009/11/30/exercise-guards-white-blood-cells-against-aging

http://s3.amazonaws.com/minnies-place-dev/data/38/original/exercisecancerpatients.pdf?1328308106

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

Wednesday, November 21, 2012

AZO for UTI's

If you have ever experienced a urinary tract infection (UTI), you know some of the major symptoms:

  • burning when you urinate
  • pain with urination
  • feeling like you have to urinate right away (almost like you are not going to make it to the bathroom in time, aka "urgency")
  • feeling like you have to run back to the bathroom to urinate again, even if you just urinated 2 minutes ago
  • many trips to the bathroom to urinate (frequency).  

It can be very uncomfortable.

The advice used to be drink plenty of cranberry juice until you could get to a doctor.

We have had the prescription drug Pyridium (Phenazopyridine) to treat the symptoms of a UTI for years.  But until this summer, I never knew that there was an over the counter version/strength of Pyridium available.  It's name is AZO.   Who knew???  You can buy it at any drugstore chain.

I want to be VERY clear here.  Pyridium treats the symptoms, but not the actual infection itself.  So, you still need an antibiotic to treat the actual infection itself.  You still need to get the prescription for that from your doctor.  But in real life, it might take a few days to get a doctor's appointment and AZO can help you get some relief until you get the prescription for an antibiotic.  It helps make you a little more comfortable and gets you over the hump until the antibiotic kicks in and starts doing its' thing.

Packaging says not to take it for more than 2 days.  This is pretty reasonable. You would want to start actually treating the infection within 2 days of onset of symptoms.

Be prepared...it will make your urine bright orange, so just be prepared for that.  It can stain your clothing.

If you have soft contact lenses, you should not wear them while on AZO as it can stain your contact lenses.

Don't take AZO if you have known kidney issues or allergies to Phenazopyridine.

But, it is a great short term over the counter drug to give you some relief until you can get to the doctor.

Cancer patients in active treatment?  Do not wait 2 days, you need to check your temperature and get to your doctor and start antibiotics ASAP. 

This advice is to help provide a little short term relief for those cancer survivors who are out of treatment, in follow up, who just have UTI symptoms .

Hope this helps!




Sunday, November 11, 2012

Thank You Veterans (not cancer related)


This post is not cancer related.  But hey...it's my blog so I get to decide what I post!!  : )

Because it is Veterans Day.

God only knows where we would be without the service and sacrifice of our brave veterans. To those presently in the military- stay safe and THANK YOU.

This is my favorite veteran story…

About 20 years ago, I had floated to the medical short stay unit and had a patient who was having an MRI guided procedure.  I asked him if he had any metal filings or shrapnel exposure.  It was the day before Thanksgiving, so it was ridiculously quiet and slow, and there were only a couple of patients there.  This gentleman said  “yes” he had shrapnel  exposure, started crying and “did I have time to hear about it?”.   About one and a half hours later I had heard his story of how he was at Omaha Beach/part of D-Day invasion.

He spoke of the scene, the friends he lost, the nurse who helped take care of him afterwards.  He wept intermittently throughout.  He told me that he had never told his story until that day, not to his wife, not to his grown son.   I asked him why he was telling me.  Basically because he was getting older, I had asked about the shrapnel (a standard question if you are having an MRI) and because I reminded him of his nurse post D-day.

I obviously thanked him for his service, thanked him for honoring me by sharing his story with me.  I urged him to share his story with his son, as it was an amazing and important one. 

A few weeks later he returned with his son to give me a wooden bowl that he had made for me.  He had started a dialogue with his son about his war experience.   It was one of those encounters as a nurse that you never forget, and I think of him of him every Veterans and Memorial Day (and every time I use that bowl).       










Some of my favorite veterans








Sunday, November 4, 2012

More Gifts for Cancer Patients




I was in The Container Store  www.containerstore.com today.  I bought 3 items that would be perfect to go in a cancer patient's gift basket.  The first two items (because cancer patients have a lot of pill bottles to handle) are awesome to help organize the actual pill bottles in a medicine cabinet. 

Be mindful though, as sometimes medicine cabinets are not the best place for your drugs because they can get damp, and this can affect the effectiveness of your pills.   But if you are going to store your pills in the medicine cabinet anyway, here are two awesome products to help you keep a little order in your life.


The first:  Linus™ Cabinet Organizer with Drawer.  Yes, yes, yes...it looks like any old plastic organizer you could pick up elsewhere.  Here's the thing.  It fits PERFECTLY on any medicine cabinet shelf.   This one has a little pull out drawer.  $9.99 at The Container Store.  It allows you plenty of places to put bottles and even to "stack" them on top of  a little pull out drawer for "regular" stuff. 

.



Linus™ Handled Cabinet Organizer:  Only $5.99 at The Container Store.  Also fits perfectly.  You can't stack with this one, but it fits many prescription bottles nicely.














The third item:   Weekly Pill Organizer

Sounds unexciting for a gift, but believe me this kind is hard to find with all the days of the week AND breakfast, lunch, dinner and bedtime compartments.   Usually I see a lot of pill cases with just breakfast, lunch and dinner as options, or "a.m." and "p.m" only.  This is the best as this is usually the schedule when most medications are prescribed.

I like how you can take out a whole days' supply in case you are just headed overnight somewhere and only want to take a one day supply of medications with you (see picture below).

I will say this one is kind of large, so it should serve as your "home base" pill organizer.  

I would suggest picking the same day that you will always fill your pill container, so that you don't forget.  I taught my 90 year old mother to fill hers every Sunday.  

Also, for an elderly friend, you might want to try taking one of each of their pills and gluing it to a sheet of paper.  Next to the pill put the drug name, what it is for,  and how many times a day they are supposed to take it.  I did this for my mom and then slid it into a plastic page protector.  Every week when she fills her pill organizer for the week she checks it against the guide I gave her.  Kind of a visual "cheat sheet".   If they give her a new pill that doesn't look like the others, she knows to call me or to ask her pharmacist about why it looks different (sometimes just a change in drug company).  Anyway, my mom really says this helps her. 

Now none of these gifts seem too exciting.  But in a gift basket with other items, I promise that the cancer patient will appreciate them!

Hope this helps. 






Wednesday, October 10, 2012

Hair Loss (aka Alopecia) and Wigs


I'm no country music expert, but there is a country song that makes me howl absolutely every time I hear it.  It's called:  "Trashy Women" by Jerry Jeff Walker and Chris Wall.

And this is my favorite stanza:

"You shoulda seen the looks on the faces of my Dad and Mom
When I showed up at the door with a date for the senior prom.

They said, "Pardon us, son, but that ain't no kid;
That's a cocktail waitress in a Dolly Parton wig".

I said, "I know it dad ain't she cool?,
That's the kind I dig."


Dolly Parton wig, Raquel Welch wig, Eva Gabor wig, Beverly Johnson wig.  What do these ladies all have in common?   For better or worse, they have been in the wig business.



 














Let's talk hair loss and wigs.  The medical term for hair loss is "Alopecia".  I believe the Latin variation of the word Alopecia translates into something like:  "Crap, my hair is falling out.  Where are my Kleenex?  I want my pre-cancer life back...NOW." 
 
Hair loss is the number one question we get asked about and usually the very first question we hear when we start telling patients about chemotherapy.  Rightfully so.  You dig your hair and you have become accustomed to having it on top of your head.
 
I have cut and pasted some of what is written below from actual emails to patients about this topic, so if you are a patient of mine, you might have heard these words before, so please forgive.
 
A quick review from an earlier posting....

The good news: chemo kills rapidly dividing cells. Cancer cells are rapidly dividing cells. They are big, unorganized, not shaped like normal cells and they proliferate like rabbits. They grow fast and out of control. So, chemotherapy kills cancer cells.....good, that is our goal.

The bad news: chemo kills rapidly dividing cells. There are some healthy "normal" cells that also come under the "rapidly dividing" category. Your white blood cells, red blood cells, platelets in the bone marrow. Also your hair follicles, the lining of your mouth, throat, GI tract. These are all rapidly dividing cells. Chemo kills these too. On the positive side, new cells are always being produced. On the negative side of things, the chemo killing off your healthy rapidly dividing cells are why you experience side effects like hair loss, mouth and throat sores, nausea, vomiting, diarrhea. Until the reinforcement new cells arrive, you have to deal with the side effects (your doctors and nurses will tell you what you can do to tolerate most of these side effects).

If you are a breast cancer patient getting Adriamycin, hair loss usually starts right before your second cycle of chemo (when or if your hair comes out depends on the type of chemo drugs given).  Some chemotherapy drugs will not cause hair loss.  Many do.  Usually you start to feel tingling on top of your head, or your scalp feels more sensitive to touch and/or sore.  Then the hair loss starts.
 
Most women want to get wig procurement done asap.  Everyone wants to get the wig in place and ready for when the first hair starts falling out. The first person I would call would be your hairdresser. See if your hairdresser has any suggestions for wig shops.

We usually suggest that you cut your hair or go a little shorter if you have long hair...like a Ginnifer Goodwin kind of length.  This is because hair tends to come out in clumps.  My patients have told me that this is what they find most depressing. They see straggly long hair clumps in their shower or on their clothes or it has fallen off into their food. With the shorter hair, they have told me it is less traumatic.  It looks better than to have long thin strands with spots that are bald.  Some patients just shave their heads right off the bat and feel liberated in a way, but most of my patients like to ease into it a bit with the short look first. It is a personal choice and everyone is different.


Wigs: Yes, you need a prescription.  Your doctor or NP has to write a prescription for a "cranial or hair prosthesis" due to alopecia due to chemotherapy and it will be covered. Don't worry...they know what to write. You don't need the prescription to just go try on wigs.  But, you will need the prescription to either fax or bring to the wig place if you are ready to order the wig.



Definitely bring a friend that you trust with you. You are going to want their opinion on how things look. I would say where you get the wig doesn't matter as much as making sure you take it to your hairdresser for shaping after you buy it. The shaping or layering makes it look more real. This is because the shape is never really right when you first see it out of the box. It always looks a little too thick on top. Your hairdresser can style it for you. I've seen some ladies get creative with $40 wigs and you would never know it was a wig. And I have seen some $600 wigs that just look like bad wigs.

Many of my ladies get their "expensive" wig and then play around with a few "cheaper" versions/styles too. On the positive side....if you ever thought about going a different color or style, now is the time to try it out!!!

Don't be afraid to ask other ladies in the waiting rooms at your cancer center if you see an awesome wig that you like. I can't tell you how many ladies have found good wig shops that way.

The good part of getting your wig at one of the medical facilities is that they are experienced with the whole insurance reimbursement part of it and will often bill your insurance company directly for you, saving you the hassle of trying to get reimbursement. Depending on what your health insurance is, you should get some money toward it or complete coverage for one wig. 


Also make sure that you get the "cap" that goes under the wig, as a lot of my women say the wig can get scratchy on your head without it. There is also kind of a gel headband that can help hold your wig in place.


All of this being said,  most of my patients take off their wigs the minute they get home. Get a few cotton scarves or caps for around the house for comfort. Silk can tend to slide on your head. Cotton is soft, tends to stay in place better and can absorb perspiration if your head gets too hot.

 
 
Here is the link for the wig catalog TLC which is basically connected with American Cancer Society.  These are reasonably priced wigs and headwear.
http://www.tlcdirect.org/Wigs-for-Cancer-and-Chemotherapy-Patients-TLC-Wig-Collection-American-Cancer-Society-TLC-Direct

Says it is for "women of color" but basically looks nice for any brunette
http://www.tlcdirect.org/Beverly-Johnson-Wig-Collection-for-African-American-Women-Cancer-Wigs-American-Cancer-Society-TLC-Direct?shw=1


Also some of my ladies prefer to wear a ballcap or hat and just velcro a "strip of hair" along the inside lining.  The hair strip has velcro on the top and the hat has velcro on it too. So basically your head can breathe in a nice soft hat, but you can have the look of bangs if you want to.  It doesn't look as stark as a baseball cap alone.  

http://www.tlcdirect.org/Straight-Add-a-Bang.html?did=67

I haven't known anyone to try these, but they are based on the same principle as the bangs above.  They allow the top of your head to "breathe" but still make you look like you have hair.  If you lose your hat, you are apt to look like a Benedictine Monk, so maybe not the best on a windy day : )

http://www.tlcdirect.org/Hats-with-Hair-for-Cancer-and-Chemotherapy-Patients-Hair-for-Hats-American-Cancer-Society-TLC-Direct

Here are just some nice soft caps. Some may not win any fashion awards, but there are also some that look soft and comfy and are cute too.

http://www.tlcdirect.org/Fall-Hats-and-Winter-Hats-for-Women-Cancer-and-Chemotherapy-Patients-American-Cancer-Society-TLC-Direct?shw=1

http://www.tlcdirect.org/Turbans-and-headwraps-for-Cancer-and-Chemotherapy-Patients-American-Cancer-Society-TLC-Direct?shw=1



Some Wig Shop Suggestions In Massachusetts:

Many of my ladies LOVED this place:

New England Hair Illusions        
Pondview Square Unit 16
Tyngsboro, MA 01879
They said Deborah at NE Hair Illusions was GREAT.

 

Carolyn's Wigs

32A Pleasant St, Wakefield, MA 01880

 

Nick Georges Hair Studio

(978) 750-8200

130 Sylvan St Ste 5
Danvers, MA 01923
 
 
Friend's Boutique
44 Binney Street
Boston MA 02115
The scarves and hats there are pricey. But some patients have said that the wig costs are not as high as the other stuff they sell there.

 
PK Walsh
75 2nd Ave # 430, Needham Heights, MA 02494
(781) 444-4414
Sheer Sensation
1980 Acushnet Ave
New Bedford, MA
02745

 
Joann Dwelly
930A American Legion Highway
Westport MA 02790
Here's a business that comes right to your home for a fitting.  I have never known anyone to try it, but if you try it, please let me know what you think!
Windows of Hope Beth Israel Deaconess Medical Center
Windows of Hope is located on the 9th floor of the Carl J. Shapiro Clinical Center and is open Mondays - Fridays from 9:30 a.m. to 5 p.m. or by appointment. Make an Appointment: 617-667-1899


 
MGH Images BoutiqueYawkey Center for Outpatient Care
Suite 9B
Boston, MA 02114
Phone:
617-726-3211
Fax: 617-643-1121


 
Images at Northshore 102 Endicott Street
Room C 168
Danvers, Ma. 01923
Phone:
978-882-6365
Fax: 978-882-6516
By appointment only



The American Cancer Society touts several wigbanks in Massachusetts.  ACS provides some free wigs to designated ACS wigbank salons.

Here is a listing as of 10/10/12, but keep in mind, I have found that sometimes the ACS wigbank info is not always current or that useful.  I would suggest calling the 800 227 2345 number if you are in doubt:

Hair Kingdom - Wigs - Free or Reduced
Adobe® Acrobat® PDFSomerville High School - Wigs - Free or Reduced
Adobe® Acrobat® PDFMinuteman Regional High School - Wigs - Free or Reduced
Adobe® Acrobat® PDFBiyoshi - Wigs - Free or Reduced
Adobe® Acrobat® PDFBoston Medical Center - Cancer Resource Center
Adobe® Acrobat® PDFMasquerade Wig Boutique - Wigs - Free or Reduced
Adobe® Acrobat® PDFMargo's Too - Wigs - Free or Reduced


I read this article about an ACS wigbank and called the very nice Michelle who said to call her before you come in at:  617 738 1184 and ask what they have in stock and make an appt. FREE.

http://www.wickedlocal.com/brookline/news/x353265730/Brookline-hair-salon-helps-cancer-patients-through-American-Cancer-Society-Wig-Bank?zc_p=1

http://www.biyoshisalon.com/


Try to remember this.  When chemo is over, you will get your hair back.  You will get your hair back.  You will get your hair back.  Your hair may come back a different texture, color or curlier, but you will get it back.   Your baldness is temporary. 
 
 
One final note....and it's just my opinion, but if Jaclyn Smith wigs look this bad on Jaclyn Smith, there is no hope that they are going to look decent on the rest of us!!!  
http://www.paulayoung.com/category/wigs/jaclyn+smith+wigs.do?

A8034


Hope this helps!

Sunday, October 7, 2012

Nurses as Advocates...Love Your Nurse!!

They take great care of you.  They also rub your back when you need it, make you a peanut butter sandwich at 2 a.m., get you to laugh, let you cry on their shoulder, are quiet when you need them to be, know just the right trick to get your portacath to work, they run interference with that surly doctor (or complement the great doctor!).  They know things about you that you have never told anyone else.  They have been your champion since the first days of chemo. They make your clinic day or hospital stay bearable.  They help you live.  They help you when it is time to die. You rely on them.  You trust them.  You love them (and they love you too!!).  They are your NURSES!!!
Here's a shout out to all of the AMAZING nurses I have worked with in the past 32 years.  I'm not supposed to tell you where I work, so here's a vague shout out to the nurses I love and respect the most:  The nurses of 7 East and the nurses of our chemo clinic!!!

To the survivors out there....I hope that you all had the experience of having that one special nurse (or hopefully many special nurses!!) who helped you get through your rough times.

If you did have that experience, please consider nominating that nurse for a CURE Magazine Extraordinary Healer Award.   Believe me, even if she doesn't "win",  the nomination will sincerely touch your nurse's heart.

I was grateful to be nominated one year (so no, you can't nominate me again and I am not trolling for votes!!  : )).  But something really struck me that year.  CURE is a national magazine. There were only about 100 nurses nominated across the country.  I was shocked.   I know at least 100 nurses in my own hospital worthy of this award.

So, I am on a personal mission.  A lot of our patients don't have computers to do online applications to tell about their nurse.  I am starting a little campaign in our chemo clinic.  If the patient fills out their essay on paper, I will type it up and submit it online for them.  I am going to put up posters to remind patients of this contest.  Hey...the winning essay author patient/survivor wins a trip too!!

I want to see WAY more oncology nurses nominated for this award!!!!!!!  They are out there working hard everyday!!

 http://www.curetoday.com/index.cfm/fuseaction/magazine.extraordinaryHealersLanding?contest=3
 From CURE:  "About the Contest
Tell CURE about your nurse, and you both could win a trip to Washington D.C.!
Do you know an extraordinary oncology nurse whose compassion, expertise and helpfulness made all the difference in your or your loved one's cancer journey? CURE wants to know!
For the seventh year in a row, CURE is giving you a unique opportunity to honor an oncology nurse through the 2013 Extraordinary Healer Award for Oncology Nursing! Now through March 20, 2013, CURE will accept essay nominations from patients, survivors, caregivers and peers detailing the extraordinary skills that a special oncology nurse has exhibited.
Three nurse finalists and the individuals who nominated them by essay, plus one guest each, will receive round-trip airfare and two-night accommodations in Washington D.C., where they will be honored at a reception to be held in conjunction with the Oncology Nursing Society's 38th Annual Congress, on April 15, 2013. One nurse will be presented with the 2013 Extraordinary Healer Award for Oncology Nursing, and will also receive a special gift in recognition of his or her service to cancer patients and survivors.
Send us your essay nomination before March 20, 2013 for the chance to join CURE in honoring your oncology nurse!"

A bad nurse or even just an "okay" nurse can make your hospital stay intolerable.  A great nurse can make such a difference in your whole cancer experience.

Here is one of my fabulous nurses that I had when I had surgery this summer.  She was wonderful, full of kindness and happiness, and she had the world's greatest name.....ROSEBUD.  I kid you not!!  She was just what you would want for a nurse.  Thank you Rosebud!!  You can best believe that I will be nominating Rosebud for the CURE extraordinary healer award.




My other fabulous nurse?  I don't have a picture because I met her in the recovery room and didn't have my phone with me to take pix.  Her name?  Jane Thompson of Ellison 3 PACU.  When I met Jane, I absolutely knew that I was going to be okay.  We had a moment that I will absolutely never forget.  Thank you Jane!!!  Your mother (a nurse) would be SO proud of the amazing nurse that you are!!!

Here's to the NURSES WHO ROCK and the patients they LOVE!!!!!!!!!!!
  
Major kudos to this young nurse that gets it.  Use any and all tactics that you need to, to connect with a patient.
http://www.timesunion.com/local/article/Grumpy-patient-tender-nurse-1357686.php



This is just a shout out for an awesome blog devoted just to cheesy vintage "nurse" romance trashy novels whose cover pix I have copied below!!  Hysterical!!
 




Wednesday, September 26, 2012

Guided Imagery Gone High Tech-"Whip Cancer"


I just read about this app on an oncology nurse forum.  "Whip Cancer" is a 17 minute guided imagery session.  You pick your type of cancer on your iPad or iPhone and up pops an anatomical drawing of the part of your body that is affected by cancer.  

If you have ovarian cancer, an image of the female torso with anatomic drawings of your ovaries, fallopian tubes pops up.   You can also bring up your type of tumor and you can place it anywhere you want on the screen.  You can place it right on your ovaries.  The site speaks of being able to make your tumor disintegrate and leave your body, as a very calm and zen-like voice helps you to relax.

You can also tap the screen on the "tumor" and there is an extremely lame "explosion" with no noise that occurs.  In its' defense,  it is not a video game.  Also, they are trying to get you to meditate and relax so the idea of a tumor exploding all over the place might not be what they are going for!!

The pros:
  • You can visualize and target in on your particular body part affected by cancer
  • The woman's voice on the app is very calming and relaxing.
  • It is only $2.99 and you have it right with you on your phone.  This would be helpful if you are sitting in the chemo clinic all stressed out and needing a little calming down.  Just put your earbuds in and take deep breaths and relax.  
  • I like that the guy who invented this app did it in honor of his sister in law.  Apparently she was having difficulty visualizing where her tumors were and she wanted to focus on the treatment destroying the tumors in her head.
  • At 17 minutes long, it is something you could conceivably use at the start of each chemo session or to help you fall asleep at night.

The cons:
  • I really wanted to see the tumor blow up with all kinds of rocket launchers, bells and whistles...BE GONE WITH YOU FREAKIN CANCER!!!  The cancer graphic is kind of lame.  Although I did enjoy repeatedly tapping it, to get it to break up into small pieces.

If you are someone who appreciates guided imagery, or even something to help you fall into a nice nap, at $2.99 what do you have to lose except for $2.99?

Also, I just downloaded it and only did one session, so maybe there is more to it than I know.

Here's the founder explaining this app:       
 
 
 
Bottom line:  may be useful for some of you.  Hey, if it helps even one person, it is worth it!!!
 
 
Here's the blurb from the company who makes it:
           Purchase at iTunes Store for iPhone & iPad
"Whip Cancer empowers people with cancer to mobilize their immune system to actively bolster their cancer treatments and recovery. They participate in their own healing by placing vivid images of their cancer cells onto stunning anatomical illustrations at the location of their cancer, and then participate in a guided imagery audio session to deeply relax and focus on cancer cell elimination. “Imagery is frequently used to empower patients to be active in the healing process, thereby reducing stress and focusing the body's energies on targeting the disease” says Zack Spigelman, MD, Internist, Hematologist and Medical Oncologist at New England Baptist Hospital in Boston. • Select cell photos from 108 cancer types • Place cells onto anatomical images on the location of your cancer • Use a 17 minutes guided imagery narrative that you can control • Zoom in on the anatomical image • Make cancer cells larger or smaller, fade away and then reappear • Tap the cancer cells to make them break apart ||||||| © Copley Raff, Inc. 2012 ... for iPhone & iPad"
 

Thursday, September 13, 2012

Special Interactive Webinar About Ovarian Cancer 9/20/12


These are not my words, but they share my sentiments.  This announcement comes from an organization that is near and dear to our hearts....The M. Patricia Cronin Foundation!!!  They are a member of the Ovarian Cancer Awareness Coalition.  See their invitation below.




SAVE WOMEN'S LIVES!!!

SPECIAL WEBINAR THURSDAY, SEPTEMBER 20TH AT 12 PM AT:
 

 
"On Thursday, September 20, 2012, at 12:00 PM EST the Ovarian Cancer Awareness Coalition will be hosting a 60-minute informational and interactive webcast about ovarian cancer. The webcast will focus on getting the facts and knowing the signs of ovarian cancer as well as treatment and research. During the webcast we will be talking to doctors from the Dana-Farber/Brigham and Women's Cancer Center in Boston as well as taking live questions from viewers."


There will be a link available to view the broadcast on the Ovarian Cancer Awareness website above.



The Massachusetts OvarianCancerAwareness.org Coalition is composed of:


Also check out their webpage to see a recent PSA to discuss some of the signs and symptoms of ovarian cancer with someone else who is near and dear to our hearts.....the very fabulous Anne Tonachel!!!!

http://www.ovariancancerawareness.org/








Sunday, September 9, 2012

The Best Gifts to Give Cancer Patients-Part II

Here is a quick addition to my original post about "Best Gifts to Give Cancer Patients".

I recently had abdominal surgery and can personally attest to the fabulousness of the following products:


The Gopher!!!  (or any "pick me up" tool.  There are a lot of brands out there).


I found that bending down to pick things up post-operatively was the hardest thing for me to do.  Of course since it was the hardest thing to do, I kept dropping things like crazy!!!  Enter....The Gopher!!!  Yes, I realize it is one of those "Seen on TV" items, but it really is great and does work!!!

No abdominal surgery?  If you have a bad back or painful bone metastasis this is also a great tool to help you grab things!!





No Tie Shoe Laces
 

When I was trying to plan what items I would need post-operatively, I knew that I would need sneakers to help me walk outside during my recovery period.  I also knew that it would be tough tying my sneakers (due to bending and my abdominal incision).  I initially thought that backless sneakers would be the way to go.  But, they are just as expensive as regular sneakers and I wasn't crazy for the way they felt on my feet.  I still felt like I wanted the support in back of the sneaker.  I also didn't feel like ponying up $80-$100 for something I would only be wearing for 8 weeks.



Then, a FABULOUS and thoughtful friend (Thank you KG!!) gave me a pair of  "No Tie" sneaker laces.   GENIUS!!! 

They have all kinds of "No Tie" sneaker laces, but my kind friend gave me the "curly" kind.   Basically you put them on the first time while your feet are in the sneakers,  and then you pull them to tighten.  Et Voila!!  You are good to go and can just slip your feet in and out with only a minor occasional tweak.

"Sofsole No Tie" laces are what I received.  They are available on Amazon for $2.99.


The curly kind looks like an old phone cord.



This is kind of what they look like in your sneaker.  However, if you have an adult sneaker, there is less of the "curly" part on top.  If you have white laces they blend in more with your sneaker.
 
Okay yes,  you may not be winning "America's Next Top Model" while wearing them, but if you have trouble tying your sneakers, this is a comfortable and affordable option versus having to go out and buy a whole new pair of sneakers.




My favorite (which my friends have heard all about...ad nauseum!!)....


The Hammock Human Extractor!!!

My favorite place in the summer is my hammock in Maine.   Because of incisional pain, I knew that I would not be able to comfortably get in or get out of the hammock.  I stared at my hammock daily and longed to be in it!!!  Everyday I would try to gauge whether or not it would be possible to try getting in it. 

My fabulous brother took a cheap closet organizer we had (Target-under $10) and wrapped it around my birch tree.  He tied it in the front and fastened it in the back with a small bungee cord.  PERFECTION!!!  I was able to use it to help me get in and out of the hammock more easily.  I held it like a waterskiing rope, rocked back and forth with my feet and I was out!!  TOTALLY AWESOME!!!

 
 
So, not all cancer survivors may have this hammock dilemma, but if you know one who does....they will thank you for this device!!!!


Bottom line:  cancer survivors will be grateful for your thoughtfulness with any of these gifts.

Hope this helps!!

Friday, September 7, 2012

The Kindness of Strangers: Mercy Flight Indiana- Jim and Kay Butler







Six years ago we found out about a camp in Montana
(Camp Mak-A-Dream http://www.campdream.org/adult_retreats.html ) that was having a women's retreat just for ovarian cancer survivors.  It sounded like an incredible experience and we wanted our ovarian cancer support group members to be able to participate. 

Flying from Boston MA to Montana is not cheap.  At the time, the round trip airfare was around $500 to $650 per person.  Without going into specifics about the financial status of our support group members, I will just say, there were several of our group members who could not afford this at all. 

Some of our group members used frequent flier miles, so their airfare would be covered.  We applied for and received some grant funding to help supplement those who couldn't afford to pay part or all of the fee.  We received scholarships for several of our group members to cover the cost of the retreat itself.   We supplied some money for our group members from existing group funds.  After all of this wrangling and budgeting and dreaming, we still came up short.

I knew about some transportation organizations which helped transport cancer patients to treatment facilities for chemotherapy, radiation therapy or surgery.  But I had never heard of any group that might help us for something like this.  So, I called a few of the bigger organizations without any luck. 

Late one night I wrote a letter describing our situation, and just started emailing commercial airlines, transportation groups and networks of pilots who transport patients.  If they couldn't help, I asked them if they could point me in the direction of someone who might be able to help us in anyway.

Here's what I learned that night.  The people who run these organizations are the nicest and most helpful people on the planet.  I instantly started receiving emails from pilots, dispatchers, anyone connected with air travel of patients.  "I only fly small aircraft and would be unable to fly your ladies from Boston to Montana, but try contacting this person" etc, etc, etc.   By the next morning I had received multiple emails with kindly suggestions of who to try next, or just offering up support and the promise to pass along my letter.  AMAZING, KIND AND GENEROUS SOULS....THANK YOU!!!

Then I received an email that I will NEVER forget.  I don't remember the words verbatim, but the gist of the email was this:  "we do not have the resources to fly your group members from Boston to Montana on our own aircraft, but we would be pleased to offer you 2 commercial airline flight tickets so that 2 members of your group who could not afford to attend, can now attend the retreat".  What???????? UNBELIEVABLE.  AMAZING. GENEROUS.  INCREDIBLE.

Guess what?  This organization followed through and purchased 2 commercial air tickets for 2 of our ladies to go to the retreat.  Between the combination of some group members' ability to pay some of their own way, grant money, our own funds and now the generosity of these strangers, we could now afford to go to our retreat as a group.

We went to the retreat.  It was "a life changing experience" for most in our group.  We met about 60 or 70 other ovarian cancer survivors from around the country.  The women in our group became even closer.  They met other women from around the country who would become lifelong friends.  They received professional support and counseling from an onsite social worker at the camp.  They got to see a part of the country they never had seen before.  One group member who received a donated ticket had never been on a plane before, and had never been out of Massachusetts.

The organization that provided those 2 free airline tickets which made it possible for our whole group to attend together?  Mercy Flight Indiana.   The two people who read my letter and who were touched by our situation?  The two total strangers who reached out to a group of cancer survivors who they had never met?  Jim and Kay Butler.  Jim and Kay Butler.  Jim and Kay Butler.   I will never forget their names and this organization.

So, on those days when you start to feel that there is no kindness or generosity left in the world, please remember the kindness of these strangers.

If you are considering making a donation to a worthy and honest organization, please remember Mercy Flight Indiana.

THANK YOU JIM AND KAY BUTLER AND MERCY FLIGHT INDIANA!!!  6 years later we remain SO grateful to you for your inordinate generosity and kindness!!!


http://home.earthlink.net/~mercyflightindiana/index_files/Page295.htm



To make a donation or to find out more about how you can help Mercy Flight:

Mercy Flight7450 W. 1350
Demotte, IN, 46310
Phone (219) 297-3500 Hours: 8-8 Monday-Saturday
Fax: (219) 866-0586
Email:
Cheryl@MercyFlightIndiana.com
 
 



The beautiful and restorative Camp Mak-A-Dream in Montana.



Monday, September 3, 2012

September....Ovarian Cancer Awareness Month

                                                        




 
It's September.  It is Ovarian Cancer Awareness Month.   I hate ovarian cancer.  I  hate ovarian cancer.  I hate ovarian cancer.  Have I mentioned that I REALLY hate ovarian cancer???

Why?   I am the co-facilitator of an ovarian cancer support group in Boston.  Through this group, I have met THE most amazing women who have enriched my life beyond belief.  I love every single one of these ladies.  They are truly Goddesses.

Yes, I know that their collective experiences with ovarian cancer have made them into even more seriously righteous babes than they were before their diagnoses. Yes, I know that they are all fabulous and formidable.  But I do hate that they have ever had the words "you have ovarian cancer" darken their doorsteps, because I know what this has meant for them and for the people who love them.   They are the most kind, loving, wonderful, intelligent and FUN women on the planet and....this is their month.

So, today's blog entry is about the vague signs and symptoms of ovarian cancer and some ovarian happenings this month. There will be many more blog postings about ovarian cancer in the future.  Just wanted to get this out quickly, so you can check out some of these events.




http://www.layoutsparks.com/1/163648/teal-ribbon-ovarian-cancer.html


 


 #1:  The most important thing these ladies would want you to know?  Get to know the signs and symptoms of ovarian cancer.  These symptoms can be vague and easy to ignore by you and sometimes your doctors.    If you experience these symptoms, get them checked out and do it sooner rather than later.  If your doctor tries to pat you on the hand and tell you are okay, just because your symptoms are vague, BE YOUR OWN ADVOCATE AND DON'T TAKE NO FOR AN ANSWER.   Get fully checked out. 

These are from the NOCC website:  http://www.ovarian.org/symptoms.php  and more info from the Ovations for the Cure website:  http://www.ovationsforthecure.org/aware/aware.php
Ovarian Cancer National Alliance:  http://www.ovariancancer.org/about-ovarian-cancer/symptoms/

Symptoms of Ovarian Cancer:   

  • Pelvic or abdominal pain
  • Trouble eating or feeling full quickly
  • Feeling the need to urinate urgently or often
and/or...
  • Fatigue
  • Upset stomach or heartburn
  • Back pain
  • Pain during sex
  • Constipation or menstrual changes
If symptoms persist for more than two weeks, see your physician."
 
Here's one that I have heard from several different ladies.  "My pants started fitting tighter around the waist.  Every place else they fit the same.  My diet hadn't changed, my exercise regimen hadn't changed, but suddenly I felt bloated and my pants were not fitting the same".  GET THIS CHECKED OUT.

Although controversial and not the end all/be all workup, ask for a pelvic ultrasound, a CA125 blood test to be drawn and have that physician thoroughly address each of your symptoms.  And...make a nuisance of yourself if you still experience these symptoms even if nothing shows up initially.

Also, if you have a biopsy.....GET YOUR RESULTS.  Don't assume that all is well if you don't hear anything.  I cannot tell you how many times I have heard this issue come up.  You should know your pathology results within one week of your biopsy and keep calling your doctor's office until you get them.  Get a copy of the pathology report as well.






If you are an ovarian cancer survivor and you live in the state of Massachusetts, you should be grateful to a woman named Patricia Cronin.




I never met Patricia Cronin, but I love her.  I love her family, friends and the foundation who honors her.

The story goes something like this:  she had ovarian cancer and at the time of her treatment, there were no ovarian cancer support groups around.  So, she made her own!!!  Her many friends and family members became a support group for her.

In her memory, The M. Patricia Cronin Foundation has funded many ovarian cancer events, some research but most importantly it funds the ovarian or gynecological cancer support groups in many   hospitals throughout Massachusetts so that other ovarian cancer survivors have a place to connect with each other. 

One of my support group members once said, "my support group has changed my life". 

Thank you Patricia Cronin and your foundation for changing the lives of ovarian cancer survivors in the state of MA.  We are forever grateful!!!

http://www.patsfriends.com/patsstory/patsstory.asp


 




THE NOCC MA CHAPTER WALK:

National Ovarian Cancer Coalition
Massachusetts Chapter's 14th Annual
5K Run/Walk to
Break the Silence on Ovarian Cancer

Sunday, September 9, 2012 Registration 9am, Race Begins 10AM

http://nocc.kintera.org/faf/home/default.asp?ievent=1023801







Courtney Campbell of MA NOCC is seriously awesome and a major breath of fresh air over at MA NOCC.  Rock on Courtney!!!















Ovations for the Cure  

6th annual learning for living with ovarian cancer 2012 symposium


http://www.ovationsforthecure.org/events/events_up_lfl12.php

September 22, 2012
Four Seasons Hotel
Boston, MA
  • Registration and complimentary continental breakfast
    will begin at 8 a.m.
  • Lunch will be provided—free of charge.
  • Invitee participation is complimentary, and each invitee is allowed to bring a guest.
  • Parking is available at the Four Seasons Hotel
    for a reduced rate of $20.

                                                                  


If you can get past the rather annoying name,  HysterSisters there is a lot of helpful information on this site for the surgery side of things (hysterectomy etc).
 
 
http://www.hystersisters.com/vb2/view_cancer.htm



                                                                        


        

MA Ovarian Cancer License Plate Initiative
   
Are we freaking kidding here????  C'mon people.  You don't have to have been diagnosed with ovarian cancer to get an ovarian cancer awareness license plate.  If you know anyone with ovarian cancer, you should be ashamed of yourself if you have not "pre-ordered" your license plate. 

Margie Ferreira rocks and she needs you to sign up now!!!!!

http://www.massovariancancerplate.org/Mass_Ovarian_Cancer_Plate/MA_License_Plate.html

 
                                                                       

Survivors Teaching Students:  Saving Women's Lives 

Several of my ovarian cancer support group survivors have participated in this great program.
They tell their stories to medical students and nursing students with the hope that by hearing their symptoms/stories that these future health professionals will better serve their patients in the future.


http://www.ovariancancer.org/about-us/survivors-teaching-students/