The Lessons of Cancer…Bucket List

Perhaps you’ve seen the movie “The Bucket List”.  In it, Jack Nicholson and Morgan Freeman portray two terminally ill men who are total opposites.  They escape from the cancer ward and embark on an around the world trip with a wish list of to-dos before they die.  I saw that movie before I was diagnosed with Stage 3 Breast Cancer.  While watching it, I remember thinking, “Oh that’s what I would do if I ever was told I had cancer.”

Well, this lesson of cancer has been quite the contrary.  I have always had a love of travel. My discretionary spending has often gone towards travel as it has been a priority.  I’ve visited 49 states (North Dakota is the missing state) and have traveled extensively in Mexico and the Caribbean.  I have been fortunate enough to travel to Europe on numerous occasions.  But since cancer, I find I am more satisfied with the smaller things in life.  No longer do I have to have that big trip looming in the future to get me through “ordinary” life. Now I am overjoyed with ordinary life.  In my new world as a cancer survivor, I notice I have that same joy and excitement I used to get when I traveled to a foreign land, but now I am finding it every day close to home.

Recently I had the privilege to take my oldest friend (we met in kindergarten) for a medical test at her local hospital.  She lives 45 miles north of where I live.  She and her husband had recently moved into a new house which I had not seen as yet.  So this was the perfect opportunity to help her and see her new home.  While visiting her home, I had a greater appreciation for my friend’s ability to create a warm and cozy home, and for her gift of decorating.

Now that I am a pro at hospitals, I have learned how to make visiting a hospital an excursion!   At the hospital gift shop, I truly marveled at the eye of the buyer who had amazing taste and diversity in such a small gift shop.  When I spoke to the nurses who were attending my friend, I felt real joy in listening to what they had to say.

After my friend’s test was over, we had lunch at a delightful, quaint restaurant and visited some local shops in the charming town where she lives.  Had we been in France, it could not have been more inviting.  Now I so much appreciate small things like picturesque towns close to my home and new restaurants that don’t have to be a world away.

So often in my “old life” I would think, “Oh, if this would happen, I would be happy.”  In cancer survivor mode, I wake up and I am happy. The details don’t matter as much.

The Lessons of Cancer…When to Keep Your Mouth Shut

Today I accompanied my mom to assist her in purchasing a new car at a local car dealership. Jim has sold our family quite a few cars over the years. The last time I saw and talked with Jim was a week before I started Chemotherapy 13 months ago. After a little cancer small talk, Jim asked me what I have learned after going through a year of cancer treatment.

I immediately respond with this self-righteous but truthful statement: “I realize that some times I have much patience and compassion for someone who wants to complain to me about their sore thumb (I pulled this body part of the air to use as an example), and other times it seems so small to me I just want to slap them when they start to complain and say ‘if you only knew'”…

Just then, Jim sheepishly pulls his hand out that was hidden from my sight behind his desk. In clear view he shows me his battered thumb that was bloodied, bruised, and scabbed from a fall he had over the weekend.

One lesson I HAVE NOT LEARNED is when to keep my mouth shut!

Learning to Live with Lymphedema

LymphedivablogWhen the title of this Blog Post entered your Inbox, let’s face it, your heart did not go pitter patter with excitement.  Please try to stick it out!!!  You will learn something and I will attempt to give you a few laughs along the way!   You and your Lymphatic System have something in common–   misunderstood and under appreciated. There are 500 to 700 lymph nodes in the body. Who would think if you have one or a few of those removed, in my case 14, it could cause so much trouble?

My Lymphedema was under control until I picked up those 3 plastic bags of groceries with my impacted arm and then my POOF of Lymphedema came back with a vengeance. Now you cannot yell at me because admit it, you have done it and later regretted it even if you have no chance of Lymphedema.  Who wants to make 3 trips from the trunk of the car if you can do it in only 1 trip. And, of course, I had about 50 pounds of items in those 3 sacks because I tell the checkout girl, “put all you can in one bag.” I HATE IT when they put a box of jello in one bag, a bunch of bananas in the next, and on and on until you have about 20 bags with nothing in them, and you get home and you wonder how you can make plastic monkeys for the kids out of all these bags you have sticking out under your sink.  Then the environmental guilt hits you, and it is a downward spiral from there.

Starting with that one mindless “carry the heavy groceries all at once” moment, my arm started swelling up, and then my hand, and then my fingers until it was larger than it had ever been. It really scared the you know what out of me. Suddenly, all I could remember was the only woman I knew who had a Mastectomy when I was a child. She had one huge arm and one smaller arm, and she always wore sleeveless tops. Suddenly, I felt great compassion for that woman.

Yolanda is an inspirational Stage 4 breast cancer survivor from my internet support group. She and I were discussing Lymphedema and our latest flare ups. Very reluctantly, Yolanda and I are realizing that we are dealing with a chronic condition that changes our lives forever.  It is just now dawning on us how much daily time and attention Lymphedema requires.

My Lymphedema first showed itself during Radiation treatment which is common. The lymphatic system is compromised because the onslaught of radiation overwhelms the system. An occurrence can happen  20 years or more after surgery!  Lymphedema may not be present and then one wrong move and PRESTO!

For those of us at risk for Lymphedema things that cause flare ups in addition to heavy lifting is anything that  requires repetitive motion like shoveling snow, sweeping with a broom,  gardening, exercising, mopping, raking, any other kind of shoveling like dirt or digging,  vacuuming, typing on the computer, extreme heat or extreme cold, and injuries to the arm of any kind.     This is why you must wear a compression garment when doing those things.  Many women find it necessary to wear a compression sleeve every day.

YOU CANNOT HAVE any needles – blood tests, shots, or blood pressure taken in your arm at risk.  This is imperative!  I also heard from one woman who got Lymphedema after a manicure!  Even insect bites can flare up Lymphedema!

When flying in an airplane it is ABSOLUTELY NECESSARY that you wear a compression sleeve or wrapping if taught to you by a Lymphedema Specialist. One of my radiation nurses was a 20 year breast cancer survivor.  After 20 years, she figured the risk of Lymphedema was over, so she took a short 1.5 hour flight without a compression sleeve. When she landed her arm was 3 times its size and she has had to deal with Lymphedema ever since.  Another gal I met at my Oncologist’s office had the very same experience 3 years after cancer treatment – one flight without compression and bam!

All of this sounds rather ridiculous, doesn’t it?  I mean, come on, sweeping your front porch and suddenly your arm swells up for the rest of your life?  This all seemed outrageous to me too, even though I have been to two classes outlining the potential horrors.  I had to test it all out to see if  the crazy person who made up these rules was right! I hate stupid rules!   Well, guess what?  Whoever “they” is, was right.  I had to learn the hard way that it is necessary to follow the Lymphedema Rules.  UGH!

And if your closest and dedicated friends and family still ask, “How are you feeling?” they sure don’t want to hear about Lymphedema.  During your fight for life during cancer they sent you the cards, baked you the muffins, visited you,  took you to Chemo, bought you the gifts and listened to your complaints. My friend, Anita, even attended a Lymphedema Class with me!  Talk about above and beyond!  But, let’s face it, hearing about Lymphedema is about as exciting to them as I used to get when my grandfather would start talking about GOUT, and before I had a chance to yell, “No, Papa, don’t do it!” he was taking his sock off and showing me his big, swollen red toe!

This breast pillow/seat belt cover for the car has helped me so much.  I have it for sale in my online store for $19.90 with free shipping.  The compression of the seat belt caused flare ups in my Lymphedema – this helps!  Click on image!

 

BreastBuddy1

I am so fortunate to such a great Lymphedema Specialist, Mary Berg, with the Mercy Health System in Toledo, Ohio.   She has helped me so much with lymphatic massage, education, and the correct compression techniques for my hand, arm and trunk.  And oh yes, you can have Lymphedema on your body called Truncal Lymphedema which requires compression garments on your chest area.  More fun!  Mary knows who I am because she has had plenty of other patients just like me…non-compliant.  We don’t follow the rules and then come screaming and crying to Mary for HELP!!

If I would have had on my compression sleeve, I could have lifted those bags of groceries probably without incident. But I did not have it on because I was not expecting anything out of the ordinary (at least that is what I told Mary).  The sleeve pictured at the top is made by Lymphedivas.  Just so you know, the part that covers the hand is called a gauntlet.  They are certainly a lot cuter than plain and boring beige.  Lymphedema garments now take up a whole area of my closet.   I was recently fitted for a Juxtafit sleeve which velcros on rather quickly.  This is great to put on if you are going out to garden, going to exercise, or do anything that you need protection in a hurry.  The picture below is the Juxtafit and has to be measured by a professional.  I will admit, it is handy (no Lymphedema pun intended).  It isn’t my favorite thing to wear, I must admit.  It certainly is not every women’s idea of high fashion.  But it works!

juxtafit

Oh, one last very serious thing, Cellulitis — Cellulitis is a skin infection which can occur very easily with Lymphedema if you have an injury to your hand or arm. If untreated, Cellulitis can be deadly.  Even a small burn or cut can put you at risk. Therefore, as a precautionary measure, it is necessary to wear gloves while doing dishes and housework, yard work, or any heavy duty work that puts your hand/arm in danger. Insect bites can cause cellulitis so in warm months, it is important to wear insect repellant and sunscreen as even sunburn could cause cellulitis. I have to carry with me anti-bacteria gel and antibiotic lotion to apply immediately even if I get a paper cut or hangnail!  And at the first sign of any infection, I have orders to get to the hospital Emergency Room immediately.  And if you are traveling, in some cases it is  wise to have an antibiotic with you.    I don’t want to die of Cellulitis because I got a cut on my finger while peeling potatoes after I fought my way through to become a Breast Cancer Survivor.

If you are a Breast Cancer Patient or Survivor and have had even ONE LYMPH NODE REMOVED, get to a Lymphedema Class and find a Lymphedema Specialist immediately.   (update:  I have now heard from two women who have Lymphedema with no nodes removed!)   If your local hospital does not offer one, find a major breast cancer center which does.  It is worth the drive to find out the dangers and how Lymphedema can be avoided and treated.  It is absolutely IMPERATIVE that you learn about this chronic condition – how to prevent it, how to control it, and what to do if you already suffer from it.

The Joys and Sorrows of Having a Prosthesis after Mastectomy

After I got out of my car and made the walk from the car, through the garage, and up to the door of my house, I looked down and discovered I only had one breast! My large prosthesis which matches my remaining breast was gone!  I had a Mastectomy due to Breast Cancer just over a year ago.  Utter panic set in. What the heck happened to it? I retraced my steps from car to house, and it was nowhere to be found.

Immediately, I began to review my day thus far.   Vividly, I remembered inserting the prosthesis into my bra while getting dressed.  In the late morning I had a medical appointment at my local hospital which was a “strip to the waist and put on this hospital gown” kind of appointment.   Oh no, I then remembered while getting redressed that I just stuck the prosthesis into the bra without slipping it back into the prosthesis pocket.  I did so because I was worried the door of the examining room would be opened at any given moment onto a busy hospital corridor and there I would be, half naked, inserting boob into bra.

While driving home from the hospital, I recalled that I needed an oil change and my tires were low.  Since it is the middle of winter and snowing pretty heavily,  I stopped at one of those pay double but stay-in-your-car oil change places. The attractive young male manager motioned me to drive my car on top of two narrow metal strips so your car hangs over a large pit so the oil change guy can stand underneath and change your oil.  Whew, driving onto those narrow tire strips always makes me a little nervous.   After I accomplished that, I could not find the hood release since I drive a relatively new car, and I don’t pay attention to those kind of things.  I open the car door and am half hanging out of the car reaching down, grasping and grappling any lever that is under the dashboard while trying to find the one that magically opens the hood.  Mr. Hunka Lube Job sees my struggles since I am practically standing on my head and asks if I need help.   He reaches into the dark abyss and PRESTO, the first knob he pulled did the trick with his charming, I should have been a movie star, smile.

Now the panic really begins to mount. OHMYGOSH, my fake boob must have fallen out at the oil change place while I was hanging out and doing acrobatics over the pit! Oh no, horrors, how do I possibly call the place and ask Mr. Hunka Lube Job if a big silicone boob was found in the bottom of the oil change pit? Then all kinds of things start running through my head like the fact that fake boob cost $400.00 and that’s too much money to waste and not call.  And what if they did have it? How do I walk into that place and retrieve my errant boob in front of the all-male employee review? It was all too awful to face. Then I started to laugh thinking of that prospect until tears were streaming down my face.

Just then another light bulb went off in my head. Before I drove into my gargage, I noticed papers were strewn over my yard because of the windstorm the previous day which was also garbage pick-up day.   I had gotten out of the car and chased the flying paper all over the front and back of my house as snowflakes began to fall heavier.

I flew out of the garage and began charging all over the half snow-covered lawn looking for Silicone Boob. I was running like a crazy woman desperate to find my boob before my neighbor, Jerry, came home from work. He would offer to help me find whatever I was looking for because he is a nice guy. I had to hurry, looking down at my watch.

On the second run around my yard, I spotted Silicone Boob out near the mailbox which faces the street.  There it was lying face down in the grass peaking out under the newly-fallen snow. My delight was deep and real. I tenderly picked it up like it was a child who had been lost and now found. I began talking to IT and promised I would never again just shove it in my bra without securing it properly and treating it with the respect it deserves.

How was your morning?         Please click on the picture below for more info on this great pillow / seat belt cover!  Works wonders!

BreastBuddy1