Monday, October 31, 2011

Locks of Love

I had the greatest surprise ever this week; my daughter in law, single-handedly drove my four grandchildren, seven hours, in her min-van, to my house to celebrate the oldest one’s sixth birthday. If you do the math, you will realize that she drove four children under the age of six, just to come and see me. She is one brave woman and I cannot thank her enough. It was a great week full of baking cakes, making Halloween decorations and sewing headbands.

The kids were awesome and the week was a huge success. My daughter even managed to bring my grandson up for an overnight; it was the very first time that I ever had all of my grandchildren under the same roof, at the same time. And guess what? I didn’t even manage to get one picture of all of us, all together, in the same frame. Guess we will have to shoot for another visit!

While they were here, Aubrie, four years old, brought along the consequences of an impromptu haircut, from her neighboring four year old friend. A few weeks before their visit, Aubrie’s little friend whacked off the front of her hair, right down to the scalp. Her mom then took her for a “real” haircut. Since the girls are aware of my leukemia, and know that children can also get leukemia and lose their hair, Aubrie reluctantly allowed over ten inches of her hair to be cut, in order for it to be donated to “Locks of Love.” We actually sent it off in an envelope while they were here.Her haircut is adorable and her mother has made the cutest ever headbands to help hide the front part of her hair.

The headbands are so stinking cute; I have found that they also help to cover up my ever thinning hair, as well. I guess I can thank Aubrie for a new look! I will be posting the etsy link as soon as she gets up and running.
Thanks to the generosity of a friend and fellow dancer, my grandkids were able to spend a fabulous day at Disneyland while they were here, too. What a bright light in my life that week was; thank you, Sabrina!

I think that I have finally recovered from all of my excitement and shall be posting updates on blood work and other such things as the week progresses. Thanks for all of your continued prayers and support.

Wednesday, October 26, 2011

Leukemia Wins This Round

Life has been crazy for me during the past two weeks. The craziness began with a trip to the Paradise Dance Festival. I competed for the last time this year. I came in second overall and wish that I had danced better, but that is nothing new. As much as I hate to admit it, I am afraid that this damn leukemia is just going to get its’ wish; to slow me down.

I have been fighting tooth and nail to live my life just like I was before I was diagnosed with leukemia. Dancing was one of the things in my life that I was trying the hardest to hold on to. I won’t stop dancing, but I know that I need to stop competing; at least for now. I just cannot count on feeling good, often enough to practice on a consistent basis, and I never know how I am going to feel when the competition day actually arrives. Not to mention, the competition itself; it has become increasingly exhausting. I do really great for the first four dances, but my energy wanes greatly over the next four. Not to mention, I am completely wiped out by the time the weekend is over. So, for now, I will continue to practice and dance when I am able and will have a tentative plan to compete next May, in Fresno.

Wednesday, October 12, 2011

Leukemia, Life and the Delete Button!

Why is it that it seems as though the delete button only works when you do not want it to? You know those times when you create the perfect resume, school report or email and it just suddenly disappears; yet, when you maybe say something that you don’t mean, or your words do not come out just the way you planned, they are sent or said out into the universe, never to be forgotten or returned.

I am sure that we have all said or done things that we would like to delete, but as Murphy would have it, the delete only seems to come into play when we least want it to. I wish that I could delete my leukemia, yet I would not wish to delete the friendships and knowledge that I have gained from having it.

I am sure that there are many things that I have done that I wish I could delete, but would I want to delete the lesson learned? No, I would not. I guess that the best case scenario would be to learn the lesson the first time and not have to repeat it; therefore there would not be a reason to hit “delete.” So, I guess that the delete button is really nothing more than a reminder that good things do often end and to embrace the good, forget the bad and when all else fails just hit; Delete!

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Click here: Where There is Love Bracelet $15.00

Sunday, October 9, 2011

Despair: A Temporary Feeling

I am relatively certain that another thing, which cancer patients have in common, is the feeling of despair. For me, it is a feeling that comes and goes. Many days I forget that I even have leukemia; I feel pretty darn good and am able to keep up with the tasks, of the day, at hand. Other days, even the simplest things can seem daunting; such as making the bed or doing a load of laundry. On these days, I just force myself to carry on. I make myself put the clothes into the washer and hit start; I drag myself to the dryer and force myself to hang up the clothes; often that is where they stay; waiting until tomorrow or the next day when the sun is shining brighter in my world, and I can and will carry them to the closet.

I don’t know what brings on the feeling of despair; it could be my medication or the fact that I have just been pushing myself too hard. It could be the fear of my cancer becoming stronger and me becoming weaker. It could be the financial and emotional burden upon me and those that love me. Or maybe, I just woke up on the wrong side of the bed. Whatever the cause, I am glad that I realize that this feeling is just a part of having cancer; and that this feeling is temporary.

Throughout my life I have lived through situations that have caused deep despair and always come out on the other side. I am generally a person full of sunshine, hope and optimism with energy to spare. I think that part of the problem is accepting the fact that my “normal” has been changed; and I do not like that change. I do not like my new “normal.” Does that mean that I am no longer full of hope and optimism; no, it just means that some days it is a little more difficult to see the sunshine.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #cancerdespair   #cmlspecialist  #cancersadness #livingwithcancer

Saturday, October 8, 2011

Bracelets are in the Mail!

Thanks to all of you that purchased my leukemia and cancer bracelets. They are in the mail, and they are beautiful! Hopefully you will all like them. I have had several people that are actually sending the links to friends that are having birthdays and letting them chose which style they like. Thank you for doing this! I will continue to sell the bracelets as long as there is an interest and desire. 

Thursday, October 6, 2011

One Thing That All Cancer Patients Have in Common

I am sure that there are many, many things that cancer patients all have in common, but one thing that I am sure of, is that the very first thing that we all have in common is a total and complete shock. No one expects to hear the words, “You have cancer.” Sure, we all logically know that cancer, somewhere in our bodies, at some point during our lifespan is a possibility; however, few of us actually believe that it will ever happen to us. Cancer is something that happens to other people, not me.

Most of us that are walking around knowingly having cancer, walked around for quite some time incubating cancer cells, without us even knowing that we were ill. Sometimes people become ill from their cancers, other times we are simply blindsided by a routine exam. I really do not know if there is a better way to get the news or not, but being told you have cancer when you really didn’t know you were sick is a real shocker. I know some people go through months and months of testing, knowing that something is amiss when they finally get the news, so maybe for them, an answer of some sort is better than the unknown, but I truly believe that regardless of the delivery, every one of us was shocked.

Life as we once knew it is gone forever. Our lives’ are not over by any means, they are just going to be different; they will never be the same. For every single person that hears those three big words, “You have cancer,” a new journey begins. While many of us will share similar treatments, medications, side effects, and results, we are all different and our experiences will all vary. We can share our stories and experiences with others, in the hope to help and to learn from each other. Cancer is a six-letter word that will change your life; forever.

FaceBook: CML: A Place for Hope and Humor

#chronicillness #cancer #chronicmyelogenousleukemia #cancersucks #leukemia #lovemylife #cml  #grateful #thrivingwithleukemia #livingwithcancer 

Monday, October 3, 2011

Medical Expenses; I Need Your Help!!

I suppose that since it is National Leukemia and Lymphoma Month, now would be a great time for me to begin freaking out about my medical insurance that resets on January 1st of every year. Since I have been self-employed, in one form or another for most of my adult life, I have never had the good fortune of being included in the benefits of an employer’s health insurance plan. I have had to purchase my own health insurance, which I have done through Anthem Blue Cross, for the past thirty years. Fortunately, I have had the wither-all and means in which to do so, despite the high rates and low benefits that have been available to me.

I have always figured that some health insurance is better than no health insurance at all, and since I have always been in great health, a catastrophic insurance plan has always been a good choice for me. A catastrophic health insurance plan is literally just that. It does not pay for the small medical instances such as a sore throat, flu of urinary tract infection, but does cover larger instances such as appendectomy’s, or in my case, cancer. The biggest drawback is the extremely high, yearly out of pocket expense. Last year, needless to say, I met that expense in one fell swoop; when I was admitted to the hospital, after being diagnosed with leukemia. Normally, this would not be an issue; I would have been hospitalized, cured and sent home. I would have had to pay one, great big, out of pocket insurance deductible. I would have recovered, picked myself up, dusted myself off and gotten right back to work!

The issue arises from the fact that my type of leukemia is not curable, only manageable, which means, extremely high medical costs that reset on a yearly basis. I will need to come up with a $5000 deductible at the first of every year for the rest of my life. This in addition to the many other out of pocket expenses and extremely high cost of my medication, has kept me up many a night; worrying.

I have been very blessed with random and surprising donations, and am extremely grateful to all of you that have helped me in my fight thus far. I have never been very good at asking for help of any kind, but I am afraid that I have been humbled by leukemia. I have found a few writing gigs and some sewing and cakes that need making, but I am afraid that none of these are yet profitable enough, to keep my head (and body for that matter), above ground for long. I have found some really cute bracelets that are cancer/leukemia related and I am going to try and sell them as somewhat of a fund raiser. They range in price from $15.00 to $18.00. If you simply wish to donate, there is a place to do so in my right column. Desperate measures require desperate times. Of course, I am also willing to consider any and all other options or opportunities offered to me.

For those of you that can and do, my humblest thanks. For those of you in the same boat, or even one with more holes in the bottom of it, you have my emotional support and empathy. And to all of you that just read and support me through encouragement and kind words, please know that I am eternally grateful. 

To order, just click on link below the picture. Thanks!

Click Here: Silver Tiffany Bangle Bracelet $18.00   

Click here: Bangle Bracelet $18.00   

Click here: Where There is Love Bracelet $15.00

Click here: Fabric Bangle Bracelet

Cancer Support Networks Provide Camaraderie And Much More

This is a great guest post by David Haas

A cancer diagnosis is difficult for anyone to cope with. Harsh cancer treatments, like surgery and chemotherapy, take a toll on the mind and body. Cancer affects both the physical and emotional wellness of cancer patients. Support networks help them untangle their jumble of fears, frustrations, and feelings.

Many deep friendships develop through cancer survivor networks. Family members provide an important support system, but unless they have experienced cancer themselves, their understanding is limited. They also have their own emotions to deal with.

People who attend cancer support meetings understand each other, because everyone is going through the same thing. Talking to someone in a similar situation is reassuring for people with cancer. Groups make it easy to get and give support and advice, and to gain a fresh perspective. The members share personal stories and celebrate life together.

Cancer support networks come in the form of community groups and online networks. They are typically free to attend, and they usually welcome anyone affected by cancer. Community groups often meet in hospitals, churches, civic centers, or member homes. Online networks allow members to connect through discussion boards, chat rooms, blogs, and electronic messaging.

Friendship and emotional support are major functions of cancer support networks. Through support groups, cancer patients and survivors are reminded that they are not alone. While each cancer experience is unique, every patient must deal with treatment and care options, side effects, and numerous decisions. Through cancer support groups, members help each other cope.

In addition to camaraderie, cancer support networks provide practical assistance. Some groups provide hats, wigs, scarves, and turbans for clients undergoing chemotherapy. Many offer free transportation to meetings and doctor appointments. And all support groups provide valuable information and resources to help people cope with treatments and recovery.

There is a cancer support group for everyone. Some support groups are designed for people touched by certain types of cancer. For example, “Reach for Recovery” supports women with breast cancer, and “Man to Man” offers prostate cancer support for men. The Cancer Survivors Network, an online community sponsored by the American Cancer Society, is open to all cancer patients, survivors, families, and friends.

Whether someone is struggling with a treatable cancer like non-melanoma skin cancer, or they are dealing with a rare disease like mesothelioma lung cancer, cancer support networks are invaluable in every phase of the disease. Emotional support is just as important and medical care for people affected by cancer. The positive, optimistic outlook of cancer support networks can make the cancer experience a lot easier to cope with.

By: David Haas

Here are a few groups specifically for CML Patients:

Sunday, October 2, 2011

All is Well in My World; But Not My Granddaughter’s (She is Not Ill)

All is well in my world, but unfortunately I cannot say the same for my precious granddaughter; it seems as though her little friend decided to try out her hair cutting skills on my granddaughter’s hair. My granddaughter is the little girl that never wanted to cut her hair; she did not want a haircut, no matter what. Her hair was long, well below her waist. It was beautiful!

It is amazing to me that even at four years old peer pressure can get to you. Her friend started out by cutting her own hair; she said that cheerleaders didn’t have bangs, so she didn’t want bangs either; so one snip, and no bangs. Aubrie was next. The problem with this is that Aubrie didn’t even have bangs; her hair was all one length. Long beautiful hair; cut to the scalp, all of the way across the front of her head; bangs and half of the front of her hair gone. I am guessing that it took more than a snip or two.

 My heart just breaks for her; she is the girlie, girl; the one that always wants her hair done, the beads on and wears some sort of catawampus outfit every day. She likes to be all dressed up and loves the Glitz.  She now looks quite silly with all of this long hair in the back and literally nothing in the front.

He mother showed her a picture of a little girl with leukemia, just like Nana has; only this little girl had no hair. She asked her if she would like to help that little girl look pretty and give her some of her own hair; her answer was simple and straight forward, “No.” Did I forget to mention that she is also very decisive?

Despite the “No,” her mother took her for a haircut. Luckily she did have enough hair to donate to locks of love and her hair does look really adorable; eventually I think that even she will begin to like her new haircut, if for no other reason than it will no longer hurt when it is brushed.

 Important lessons in life rarely come easy; her parents had just had the conversation with her about being her own person. They told her that even if her friends tell her to do something, it doesn’t mean that she has to do it; especially if it makes her uncomfortable, or she knows that it is wrong. Talk about timing; looks like she learned this lesson the hard way. 

Nothing like a big bow!

Bricks for the Brave!!