Friday, November 29, 2013

Gone From My Sight

Gone From My Sight
by Henry Van Dyke
I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, "There, she is gone"

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices
ready to take up the glad shout, "Here she comes!"

And that is dying...

Tuesday, October 15, 2013

Treats and Treatments

It’s been awhile since I’ve posted anything on this blog.  I’ve had lots to tell you, but some days, I lacked energy.  Other days… motivation.  And sometimes, the words just didn’t flow.

The lymphedema (swelling in my right arm and hand) continues.  Some days the swelling is very tight, and other days, it lessens.  I’m supposed to keep it elevated to make it easier for the lymphatic fluid to drain.  I do that most of the time, but I get frustrated when it doesn’t seem to make a difference, so I put the pillows aside and try exercising my arm, hand and fingers for a while, or riding my stationary bike or taking a walk around our backyard.  

Not everyone is in agreement on how to treat lymphedema.  We’ve tried a lot of things, including wrapping cabbage around my arm, which is supposed to help the fluid in my hand and arm drain more easily.  It was really difficult to get those crinkly cabbage leaves to lay flat on my arm and hand, and my arm looked pretty funny, when it was wrapped.    There might have been a slight lessening of the swelling, but it’s so much work to wrap my arm, and it uses so much cabbage, that I don’t know if we will use that method very often.

Most of the other methods we have tried or are using now are more conventional, like the wonderful lymphatic drainage massages my friend, Cathy, provides, wearing a compression sleeve and elevating my arm, but I’m still drinking ginger tea and dandelion tea and eating pineapple, because they taste so good, and they’re supposed to help with fluid drainage.

I’m very glad that my hospice doctor and nurses are open to alternative treatments.  They listen and ask that I tell them of my results.  They were more entertained than excited when I told them about the cabbage leaves, but that’s okay.  It may work fine, but it will be a while before I continue with my tests of it.  

The hospice team  was very excited when I told them that swishing organic coconut oil in my mouth every morning, for about 5-10 minutes, eliminated the thrush in my mouth.  They have other patients who are using “statin” medicine with poor results, and they were happy to have a safe, simple, no side effect method of treating thrush, a common problem in cancer patients.  I was so excited that it cleared mine up quickly, and I am so grateful to my friend, Cathy, for telling me about it.  A nice second benefit of swishing coconut oil is that it made my teeth whiter!  If you try swishing coconut oil in your mouth to treat thrush, don’t swallow it.  The coconut oil by itself is safe, but after it removes bacteria and toxins from your mouth, you don’t want to swallow it and get those bacteria and toxins in the rest of your body.

I was having difficulty sleeping, due to pain.  I didn’t want to get a stronger pain medication, but I knew that I wasn’t getting good rest each night.  I need to be rested to fight this cancer, so I agreed to getting a stronger medication.  I was worried that it would make me dizzy, or make me want to sleep all the time, but it hasn’t.  It takes the pain away, and I notice no other side effects.  Hooray!  

My husband, Dave, and I were able to take a wonderful trip to North Carolina, to visit my brother, Gary, and his wife, Elizabeth, and their family!  We were only gone for three days, but we had a wonderful time!  Gary had a TV all set up so that Dave could watch the Browns, in their Thursday night, nationally televised game.  There are not many Browns fans in North Carolina (at least not in my family) but they were all very accommodating, and didn’t make us sit outside or in the basement.

Seeing my family, even for a short time, is such a boost for my immune system.  I know that I have more family coming to visit me soon, and I know that will be another tremendous boost!  All the cards, notes, letters, phone calls and visits help me get through each day with a positive attitude and a grateful heart.

All my vital signs are good, and most days, my mood is also good.  Thank you to each and every one of you for being part of my life!

Tuesday, August 20, 2013

Learning to accept change

When I lost my hair in June, it was one of the most difficult times in my life.  I felt ugly and angry and scared and extremely sad.  I didn’t want anyone to see me without hair.   When your hair comes out, it’s a process.  It doesn’t all come out at once.  Each day, I had less and less hair.  Finally, it looked so awful, I knew I had to have it shaved. 

Having David see me with just a few hairs here and there on my head was so traumatic. I cried and cried. What if he didn't love me anymore? What if he was disgusted when he looked at me. I know that David loves me, but at that moment, it seemed impossible that his love would continue once he saw me without hair. I couldn't look at myself in the mirror, but David was so kind and gentle and caring, and just held me, and told me it was fine, and I shouldn’t worry. As he always tells me, "No big deal."  

He said he would shave it for me, which he did. He did it so gently, and he even made me laugh a couple times.   He told me that I had a narrow, horizontal strip of hair that was still growing. It was at the lowest area on the back of my head, and it was still growing because it was outside the target zone of the radiation treatments. Dave told me that I had a start on a good rattail. That made me laugh.

At home, I always wore a cap, and when we went out, I always wore my wig.  Sometimes David told me not to wear my cap at home.  I was embarrassed, but he was kind, and I gradually got past my embarrassment.  

The wig I had was the same color as my hair, but I hated the texture of the hair.  It was so scratchy and tangled easily, but everyone who saw me wearing it said it looked just like my hair.  Even my friends, who didn’t know all my hair had come out, told me how much they loved my “new hairstyle.”  They were shocked when I told them it was a wig.

I wanted another wig, but didn’t have the courage to go wig shopping.  I’m not a shy person, so it was surprising to me that I was so uncomfortable with this situation.  

I finally picked a wig on Amazon that I thought looked like my color and was a nice style.  When it arrived, I was so excited that the hair was so soft and shiny.  The only problem was it was too long, and the style was not as nice as it had appeared online.

I took it to a local salon to see if they could trim it and make a few style adjustments.  They said they could, but I would have to be wearing it while they trimmed and styled.  Reluctantly I agreed.  The waiting area was full of people that day.  Hopefully, they wouldn’t pay any attention to me when I got it trimmed.

The appointment started fine, but at one point, the stylist was trying to comb through a part that had tangles in it, and the wig nearly came off.  I was terrified for a moment, but quickly readjusted it on my head.  The stylist was so embarrassed and apologized several times.  I knew she hadn’t meant for that to happen, so I tried to act like it was no big deal, so that she wouldn’t feel bad.  I didn’t look around to see if anyone else had noticed, because I really didn’t want to know.

Finally, it was finished.  It looked nice.  I was just relieved to be done.  By the time I tried it on at home, I realized I had been in too much of a hurry to leave the salon.  It really needed another inch or two trimmed off of it.  I really didn’t want to go back to the salon.

The next morning, Kylia took me to Stewart’s Caring Place in Akron, a place that offers support services for cancer patients and their caregivers.  All of their services are free.  The hospice social worker had told me that they had wigs, and I could get one for free there.

The receptionist showed us to the wig room.  There were about 100 wigs and several boxes of scarves, hats and caps.  I tried on 4 or 5 wigs, most of which made me cringe, and but finally found one that was pretty good. It was close to my hair color, and was a cute style, just a little shorter than the way I usually wore my hair.  

I was ready to leave, but Kylia said that I should try on a wig in a different color than the brown hair that I usually wore.  She pulled out a curly, blonde wig.  

“Oh no!  I’m not wearing that.”  I said.

Kylia answered, “Oh, just try it on for fun.  You don’t have to take it home.”

When she said that, I realized that I wasn’t making this a very fun trip for her or for me, and I was stressing about something that shouldn’t be a big deal.  I tried it on.  And we both laughed so loud.  It was definitely not for me, but that changed the mood.  It became a fun adventure, instead of a traumatic event.  

On the dresser, there was a wig stand with a bright pink wig on it.  It was to stay on the dresser in the wig room as a symbol for breast cancer.  I could try it on, but I wasn’t supposed to take it home.  

“Try it on,” said Kylia.

I hesitated a second, then tried it on.  We laughed even louder than we had at the blonde wig.  Kylia said she wanted to take a picture of me wearing it.  I told her, “No way!”  

“Oh, come on, Mom!  It’s actually cute on you!  I love it!”

I finally agreed to let her take a picture of wearing the pink wig.  Then she took a picture of me with the blonde wig on, and another picture of the one that I was taking home with me.  She said she was going to send them to Dave’s email address.   I rolled my eyes and said, “OK.”

When we got home, Dave said he liked the pink one, and I should make the picture of me, wearing the pink wig, my profile picture on Facebook.  

“Oh no,” I said.

Then he said he had already emailed the pictures to Kelly and his sister, Barbara, and they had already written back that they liked the pink wig.  Finally, I agreed, to post the picture on Facebook, which I did.  Within 2 minutes, it had 4 “Likes.”  I took a deep breath and made it my profile picture, which means it will be shown with everything I post on Facebook.

Kylia and Kari were “over the moon” excited that I posted the picture of me wearing the pink wig.  Dave kept asking me throughout the evening, “Now how many ‘likes’ does it have?”  

The last time I checked, there were 100 “likes” (65 for the regular post of the picture, and 35 for the profile picture.)  The comments ranged from surprised to excited to hilarious.  Really, people are so easily entertained…  

As traumatic as losing my hair was for me, I have finally reached the point where I can face it.  It wasn’t a life and death situation when I lost my hair, but it felt like it.  I know many women breeze through that challenge easily, but for many, including me, that was a very stressful situation.  

I am grateful for my family for being patient with me as I struggled to come to terms with it.  It’s interesting how cancer can turn someone with a good sense of humor into a frightened, angry person, even if only for a short time.  

Life is too short to spend it worrying.  Life is for living, laughing and loving.

Saturday, August 17, 2013

Don't be afraid

There are a few good friends that I really want to see and talk to, but I haven’t received a response from them.  I know they care, and they are either too sad or too angry or just have no idea what to say to me, or any of 100 different reasons.  I understand that.  

I wish I knew what I could say to make it easier for them.   There is no right or wrong thing to say.  I love these people, and I want them to see that I’m getting through this.  

I have so many things I need to tell them.  It’s important to me to let them know how much their friendship means to me.  Every person has played a special role in my life, and I want them to know it.  

If anyone has said to you that they would like to see me or talk to me, but they don’t know what to say, please tell them just to email me at learn4fun at gmail dot com or to contact me on Facebook (Ruth Yoder Barnes).  

And if you are one of those people, I would love to hear from you!

Tuesday, August 13, 2013

Time passes quickly

My hospice nurse was here this morning.  I told her that I've been feeling good, for the most part. I still get occasional twinges in my right armpit.  Just a sharp pain, or a pinch, that's gone in two or three seconds.  My right hand and arm are still swollen.  It was a bit more swollen on Sunday and Monday, but by last evening, it was back to the size it's been for the past month.  It always makes me nervous, when it swells, but so far, the swelling has gone back down every time.

The underside of my right arm has been very red for the past two or three days.  The nurse says that it is probably the tumor causing the redness.  As long as there is no pain or tingling, and as long as my arm does not feel hot, there is no cause for alarm.  We go over those symptoms each time the nurse stops by, but it still makes me feel better to hear her tell me "no cause for alarm."

At our recent family reunion, my cousins, and other people who have come to visit me recently, were all amazed that I look well.  And even more amazed when I say I feel well.

I am surprised at how quickly time passes.  I can hardly believe that I have passed the doctor's three month estimate of the time I had left, and that I am still feeling good.  I'm looking forward to the Wayne County Fair, but I am even more excited thinking about Dave"s and my one year wedding anniversary, on September 8.  Each day brings me closer to that important occasion.

I want time to pass quickly so that I can get to our anniversary, but I'm trying to be patient, because I want to make the most of every single minute.

My nurse reminded me when she left today that she would only be coming once a week, instead of twice, because I am doing well, and she really doesn't see a reason to check on me more often.  I am to let her know if anything changes, and the schedule can be adjusted.

So here I am, trying not to count the days, but instead to savor the moments.  Each moment is special, and I am looking for the joy in every single one.

Saturday, August 3, 2013

Making plans

Sometimes I’m so scared for what the future holds.  Then I stop and think about how far I’ve come, and I tell myself to keep going.  I’m doing well, and I need to appreciate every moment of good health.  I have to keep counting my blessings, and stay positive.

I’m only a little over a month from our one year wedding anniversary.  I’m determined to make it to that day in good health.  I want to celebrate that day with Dave and our family!  

The Wayne County Fair starts on September 7.  Kylia and Kari love the fair.  I took them to the fair 3 years ago.  Two days later,  I found Dave on Facebook, and a week after that we finally saw each other in person.  We were both thrilled to be back together after 25 years apart.  We got married two years later on September 8.  It was the happiest day of our lives.   

I have hopes that I will make it to Kelly’s birthday in November, and also, to Thanksgiving, Christmas and Kylia’s birthday.  I will give it all I have to get to those dates.  

I appreciate everyone’s good thoughts and prayers.  You are all helping me to keep going.  Thank you!

Sunday, July 28, 2013

Life with cancer is seldom predictable

After taking my husband out for dinner on Father’s Day, I noticed that my right hand and arm were swollen.  The left hand and arm appeared to be normal.  I called Hospice when we arrived home from the restaurant, and they said a nurse would come to check on me.

When the nurse first checked the swelling in my arm, she noticed that my fingernails were completely white, and the palms of my hands were red.  My feet were purple, but would change back to their normal color every few minutes, before changing to purple again.

According to the nurse, the most logical explanation for the swelling seemed to be lymphedema.  Lymphedema is caused by a blockage in the lymphatic system, which prevents the lymphatic fluid from flowing as it should.

I would need to keep my right arm elevated as much as possible so that the lymphatic fluid wouldn’t pool in my hands or arms.  The fluid  can impact circulation, which was probably the cause of my purplish feet and my white nails. My vital signs were all strong and I seemed to be in good health, other than the minor swelling issue.

A friend of mine who is a massage therapist offered to do a lymphatic drainage massage if the nurses and my doctor approved.  She said it was a very light massage that would help the lymphatic fluid drain out of my arms and eventually to my kidneys, which would be able to eliminate it.  The doctor approved, and I had the massage.  It felt wonderful.  I didn’t notice much difference in the swelling, but there might have been a slight reduction.

Occasionally, I become very irritable.   The nurses explained that the lymphatic system is responsible for transporting hormones throughout the body, and that when the lymphatic system is compromised, it can play havoc with the hormones, which is what causes me to become irritable or have hot flashes (something I had never experienced before).  Everything that happens in my body seems to affect one or more other things, causing a chain reaction that is unbelievable.

Many foods that I loved, now taste terrible to me.  Most breads, pastas, fried foods and many salads are as appealing as having a mouthful of cardboard.   Fresh fruit still tastes good, and so does peanut butter on lettuce, celery, carrots or apples.  

A month ago, I was ravenously hungry all the time, now I am seldom hungry, and often feel too full, even if I haven’t eaten.  That change worried me, and I asked the nurse about it.  

She said she would have medicine sent over to relieve the feeling of fullness.  She didn’t seem concerned about it, but I was concerned.  She checked my blood pressure, which was nearly double my usual reading, which worried me even more.  The nurse assured me that my fears about the lymphedema, and the feeling of constant fullness were what caused my blood pressure to spike.  I relaxed a bit.

She told me she would be back to check on me the following day.   

This time, instead of my normal blood pressure reading, it was 48 over 41.  Very low.  I nearly panicked again.  I couldn’t understand how I could even be sitting up with a blood pressure that low.  

The nurse asked “have you been drinking water.”  

I told her that I usually drink water all the time, but that morning I hadn’t had any water yet.  She said, “That’s what I thought.  You’re dehydrated.”  

I got my bottle of water and began to drink.  After about 15 minutes, she checked my blood pressure again, and it was exactly where it should be.  What a relief!  According to the nurse, low blood pressure is frequently caused by dehydration.  Who knew?  Not me.

I’ve been battling thrush, a yeast infection found in the mouth, and have found that the medicine prescribed to treat thrush can lose its effectiveness if used too frequently.  One of my friends brought me a jar of organic coconut oil, and said that she learned that swishing a tablespoon of coconut oil in your mouth, for 20 minutes each morning, can control or eliminate thrush.  I was willing to give it a try, and it’s working!  I’ve read that additional benefits of swishing coconut oil is that it cleans and whitens your teeth.  How about that!

I didn’t realize that once the jar of coconut oil was opened, the oil would turn into a hard white substance, similar to lard...  I wasn’t sure I could put a spoonful of that in my mouth, but I did, and I didn’t gag.  In only a few seconds, it returned to liquid form.  

Because it goes to solid form, when it’s stored at room temperature, it’s important to not spit the oil into your sink drain.  I usually get rid of it in a paper cup.  If I let the cup set out on the counter for an hour or so, the oil is hardened and can be tossed in the trash.

It’s been a few days since I’ve noticed any changes in my body.  I’m hoping there won’t be any.  If there are, I will deal with them as they arise.   

Life with cancer is seldom predictable.