In which I stand for something and face getting voted off the island.

I usually try to keep any cancer related posts on my caring bridge page but this one is a little different and I think may reach a new crowd here, one that really seems to need to be reached. Over there, it's more about me or fellow cancer warriors and well-I think we get it. And a warning-this is a bit of a snarky moment...but for a few good reasons.

Now I have to be honest real quick, about something that definitely would be better understood over there. But to be real, and honest. I'll admit this one little thing and hope that in a way you may understand. It's the color pink. Which is one of my favorite colors. More specifically the pink ribbon-the one that is used for breast cancer awareness. While all cancers suck (there's no polite way to really say that sorry), those who have been afflicted with another type understand about the pink ribbon. And how it's a bit, um, overused. In all fairness it is for a good cause. But again to be honest, because all cancers suck and are not at all discriminating in who they affect it would be nice if other cancers got the same amount of attention and support brought about like the pink ribbon does for breast cancer. I think I've seen the pink ribbon on just about any item you can think of and I imagine that everyone knows what that represents. However, unless you or someone close to you has been affected by another type of cancer, you probably have no clue what color ribbon represents each cancer. There really isn't a problem with awareness and fundraising for any cancer, it's just that all cancers need to be recognized and contributed too. I'd just love to see the great efforts of the pink ribbon for breast cancer awareness spread to other colors for other types. All people owe it to themselves to be able to recognize possible symptoms of any particular cancer. All cancers deserve to have fundraising and research and outreach. So that's my little snark about the pink ribbon.

But my irritation this week is actually in support of breast cancer awareness and particularly the efforts made by The Susan G. Komen Foundation the leaders in raising awareness, money and research for breast cancer. The foundation tries to reach as many women as possible including those that may not have insurance or a family doctor. Such as the women that may utilize Planned Parenthood for all of their health care including female care. In fact for those women, PP may be the first line of detection for those who otherwise may not be able to receive other forms of care. If you happen to be one who is against health care reform then I would say that PP is an organization that is helping reach those who may not otherwise be reached especially without health care reform. SGK donates funds to PP that are directly earmarked to be used for breast care including mammograms and other exams that could potentially catch a life threatening disease as early as possible. Makes sense to me that SGK would want to include PP in their efforts as this is all about saving lives.

However, PP is seen by some by only one thing-abortion. Some people are not able to see that there is far more good health practices available at PP including breast cancer detection and treatments than there is abortion. I'm in no way turning this into a pro-life or pro-choice argument. I only would like to point out that as I've mentioned the vast majority of the efforts at PP are for positive health care. According to the PP annual report only 3% of the services offered are abortion service. Yes, ideally that would be better at 0%, but that is not reality. If anything PP promotes ways to avoid an unintended pregnancy and potentially avoid abortions. For those that believe PP actually promotes abortions, I ask you to look at the numbers and use some critical thinking skills. The big picture here is that PP offers 97% of services again for good health related things, including cancer screening and prevention. Again SGK is the leading foundation for providing all things breast cancer related and again any money given to PP is specifically used for just that. Nothing else.

So you're probably wondering where this is all coming from? Earlier this week a blogger who's target audience is fairly large and targets women, took a stand-against the SGK foundation being advertised on her blog because they contribute money to PP who does offer abortions, a sad but legal option in our country. However, I can't reiterate it enough-the money SGK gives to PP goes towards breast health only. It does not enable more abortions to happen. End of story.

I do believe that it was this blogger's right to choose what she wants advertised or not advertised on her blog especially because I believe this blogger's ad income is now her family's sole source of income. One of the problems that I do have is that SGK is only one of many organizations that supports PP. While taking a stand against an organization who again is the leader of breast cancer support and thus helping to save many lives, there are an astounding number of companies that also support PP. Many of these companies develop and sell products that could be considered fun or even luxury items. This same blogger has decided to not boycott the companies that make these items, regularly uses and enjoys these items and by purchasing the said items obviously contributes to the overall income-some of which goes to PP. Over the past few days I have just been trying to grasp this blogger's line of thinking. Why take a stand against a foundation that's sole purpose is to help save lives but not take a stand against a company who makes photo editing programs that the said blogger admits to "utterly obsessed with editing my photographs" and publicly acknowledges the maker of her preferred editing programs as those made by a company that also supports PP financially?

I am having trouble comprehending this line of thought and action. It seems to be one of convenience at the least. At the worst it's possibly turning away the support of the many readers of the said blog and their further support of SGK. Many readers did express that this information was new to them and thanked the blogger for making them aware so that they could discontinue their support of SGK-even those who were avid supporters up until this time. What a shame! And what a disservice! Not only is that less support to a foundation that helps to save lives but also these same women may one day find themselves diagnosed with breast cancer and may feel so strongly against this foundation now that they themselves may choose to not take the help of SGK in saving their own lives or the lives of their family members.

What good can possibly come from this? I realize that speaking up and out against this will probably not put me in good favor with some. However, this has been weighing on my heart and mind for a few days. As a healthcare professional, the survivor of a blood cancer, and a woman I feel I need to speak out. As the blogger in question stated herself "If you don't stand for something, you'll fall for anything". I believe those to be very wise words and I hope that many will see this whole debacle in a new light.

And you know what? In the spirit of raising awareness, I think I may share this on my caring bridge site anyway!

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The Story of Zac Smith

Zac's story was shared with me through Kelly's Korner. His story is heartbreaking. His story is inspiring. I want to pass it along to as many as I can. He has made such an impression on me, and I'm sure many others. Though his time left in our world may be short, Zac is definitely going to be remembered.

While I hope that none of you will ever experience this, you must know that hearing a doctor tell you that you have cancer will turn your world upside down. Everything changes...right then. It's hard to explain and I'm not sure if this happens to all of us when we hear that word, but for me time became so strange. Thoughts and actions seemed to move in slow motion yet at lightning fast speed all at the same time.

One thing that I'm pretty certain about is that all who have to hear those words and face the reality of cancer become very strong and brave. Many people told me that I was strong and brave, which I appreciated because it reminded me that I was exactly that. What I want you all to know is that it wasn't something special that I did. Strong and brave is what everyone who has the experience of cancer is. Everyone.

You find yourself in a new place that is horrible and you don't know how or why you are there. And you are trapped, the entryway is locked behind you. It's like a long hallway with many doors in front of you, doors that you have to open and pass through. You can only move forward through the place and accept whatever is behind each door as you open it. There is no other way. Thankfully there is an end, an exit. Except that you may not realize that. It's true there is an end, and it's different for every person.

Some people are cured and they reach their exit. Some achieve remission but don't reach their exit at the same time, they may have long lasting damage or may have post traumatic stress. Eventually, I hope there is an exit for anyone who has a further walk in this horrible place. And then there are those who sadly aren't cured. They do reach an exit, but I don't know where it is or what it's like. I want to believe that it is a beautiful and peaceful place. A place where only love exists. Where there is only comfort, and we can shed our terribly heavy and sometimes painful bodies. A place that is our true home, with our loving Creator.

That leads me to what I found so inspiring about Zac's story. One way that each of us affected by cancer is different is how we perceive our situations. Though we are all brave and strong in action, our emotions and feelings are totally unique. These feelings will always be with us even when cancer may not. We may be scared, angry, relieved, grateful. I don't think there is a right way or a wrong way to feel. It is our personal feelings, and they are all genuine and true. Zac's life has been turned upside down. He is young and has a family and a purpose. Cancer is stealing all of that away from him and stealing him away from all of that.

Like all of us, Zac has his feelings. He also has faith. A strong and beautiful faith. It is so inspiring. I've never met Zac but I will never forget him. I hope that Zac will make the same impression on you.

The Story of Zac Smith from NewSpring Media on Vimeo.

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heavy-hearted and honest sharing of the funk

This is likely going to be a "woe is me" post, feel free to skip it if you're looking for a cheery read.

I'm feeling pretty down today. Well, truthfully I've been in a bit a funk for awhile. In full disclosure this funk has clung to me or me to it for a long time, a couple of years probably. It's wearing me down now. Today my feelings of sadness and disbelief of how my life has changed are pretty strong. Perhaps letting these feelings out will help.

I know how and why I've gotten to this place, well mostly. But completely at a loss on how to get out of it. I'm trying though, really.

There is so much joy in my heart and in my imagination. The littlest things can completely make my spirit sing. There's something or some things that seem hell bent on smothering that joy. Maybe it's me or maybe it's just the way life is.

When I was working, I worked a lot. Some days it was a standard 8 hours, some days closer to 12. All too often I would work my job, then have to come back and fill in another whole shift at night. (This is the type of thing that they don't tell you about in nursing school). It sucked so much time and energy out of me I often felt I had nothing left. It caused a certain amount of stress which led to anxiety and even depression. I missed my girls. I was fortunate to be able to stay home for Kelley's first year which sadly was filled with other things that took away from what should have been the best year of my life. Bethany however missed out completely, I went back to work before her sixth week, during off hours that Mr. H was home. Actually, I missed out completely.

I would think about all of the ways life would be better if only I didn't have to work so much. If only I could stay home. What fun I would have with Kelley and Bethany. I would do this and do that. If only...

Now it's been close to three years since I've worked. This is not by choice but by necessity of my health. I met many people when I had lymphoma who were also in various stages of battling the disease, Hodgkin's and Non-Hodgkin's. Some had less treatment, some had more. And now so many of them have gotten back to life and I haven't. This isn't fair, I'll think, why am I not back to way it was before? Oh yeah, I had a complication or two. Permanent complications, unless I opt to have this set of hideous surgeries. The ones that my Vascular Specialist can do, but doesn't want to do. The ones that my Oncologist and Osteopath both say, they'd rather I not. So, it appears that I'm stuck.

But remember how I wanted to be home so badly? Now I am. However it's not the way I planned, not at all. The girls are in school now. I am so happy to be there when they get off the bus. Their "work day" ends now when school is out, not when my work day is done like it was before. That's a great thing about being home.

The rest though? It's so strange, I have all of this time now. My days and nights run into each other. I often feel anxious like I did when I was working, as if there isn't enough time. This is a mystery to me. My obligations are few. In fact they are so few that I have become a bit of a recluse.

At first it was because I was exhausted from treatments and I had no hair. Then it was because I had started retaining fluid and looked so huge and round and puffy. It looked so odd on my short and smallish frame and I was embarrassed. When I would go out, I found that I could function ok for the day, but the next day was awful-full of pain and fatigue.

As a result, came seclusion. I stopped visiting with and talking on the phone with my friends. Allowing my only interactions with the outside world being online. I've turned down so many requests of friends who wanted to get together. I wasn't a big TV watcher, but I stopped watching TV completely, even the few shows I really enjoyed. I love music, but stopped listening to it. This became so obvious when I tried to think of songs I liked from 2008/2009 and found I only knew a handful of them. My picture taking has slowed down quite a bit, not remembering the last time I shared new pictures of the girls. (even beyond the missing camera mystery) That is just not me!

Another thing that makes me sad is how much I've come to rely on others and how I've changed the way they live their life. That has to be stressful for them. I am blessed with amazing parents who would do anything for me. I don't often have to ask them, they anticipate my needs ahead of time. Mr. H's life has become complicated. Some of the changes I believe are good for him, helping him to become the leader of our household. But some of it isn't good. He's a hospice nurse. He takes care of sick and dying patients, when he's not working though, he is still taking care of me. He can't get away from it. There are so many days that I am pretty low physically or emotionally. He has to deal with the physical help, making sure I have all of my medications, and also being on the receiving end of the emotional overload that spills out of me. Oh, my parents have had to deal with that too. And the girls. Everyone does. Back to Mr. H, he also does the bulk of our shopping and assists me with taking care of Kelley and Bethany. It's a lot. He even started taking college classes this semester and that makes me proud. Maybe college is a nice respite from the home. This is something I encourage him to do often, get out of the house and do something he enjoys, spend time with friends, even take a night or two to spend at a hotel to just be alone and relax. Unfortunately he doesn't often do any of it, maybe he's too worn out. His stress level is high and that's not good for any of us.

As for the girls, they are doing ok. I think. I hope. The initial fear of something happening to me seems to have passed. They are happy and healthy. School is going well. Outside of school they spend time with friends, spend time with my parents every weekend, are involved in church and usually an activity-currently softball. But there are clues that they miss the old life we had. Especially with Bethany. When I wear the perfume I used to wear to work she always notices it and then follows with a "remember when" story. Since I don't go out often my normal attire is pajamas. When I do get dressed even just in a jeans and tee, Bethany is completely wowed and tells me how beautiful I look.

All in all, we are surviving. But I know that I have disrupted so many lives and continue to. This makes me sad, angry, guilty. It makes me want to push myself harder physically and that inevitably ends up not so great. Humbled, the emotions overflow.

One thing that interests me is all of the neat things I want to learn and create. There's time for that now. My intentions are well meaning but when it comes right down to it I never seem to be able to start any of the tasks. I have so many plans. But it's a dichotomy of sorts. Believing that these goals will help me rise above the funk. And often unable to begin working on the things I want to do because I'm stuck in a funk. The one thing that I love and haven't lost the ability or desire to do is read, so I'm always reading. It's my hope that very soon the list of things I'm doing will grow.

There are some actual accomplishments that I must share in order to not come off as completely pathetic. I'm going out more. Taking some of the workload off of Mr. H (not much, just a bit), I'm running more quick errands instead of asking him. We have had date nights out of the house, which he loves. I'm getting out more with Kelley and Bethany, which they love. Spring softball started for them a few weeks ago. This endeavor is something that I do with them all on my own and we haven't missed a practice. I enjoy it as much as they do, maybe even more. We're going to see Taylor Swift in concert this Friday, part of Bethany's birthday gift. All of us are excited about that! These things may seem small but in my reality they are in fact big deals. I hope that my family feels the same. And I hope it's a start of progress.

Through my old job I met a friend who I had a lot in common with, sometimes I think we may be kindred spirits. Our lives have now ended up in similar circumstances where she is now disabled like me and at home full time. After we parted ways at work, we still spoke daily and spent time together. But as I fell into the funk, she is one of the many that I stopped communicating with the past couple years. No more visits or phone calls, just an occasional email. She would ask over and over for me to call her or visit or let her come to me. My answer was always an apologetic no. I have no real reason for why I shut her out but I did. Over the past couple days we have been exchanging emails and I finally asked her if I could come back into her life and maybe stop over sometime soon to visit. Thankfully she said yes. This is something that I hope I will do. It's something I need to do. Another step out of this pit of despair and self imposed isolation.

For all of you who have asked how I've been doing and got an answer that things were fine, good, etc. All of this is the real answer. Not wanting to be a "Debbie Downer", I tried to appear upbeat. To the few of my friends that I've kept it real with, I thank you for always listening and never becoming bored or exasperated with me. Thank you for helping me make it through my darkest of days.

As for those dark days, yes this was another one. This one though, I've shared with everyone. It must have been therapeutic to let it all out as I feel a bit lighter. Not sure that I really want to hit submit, but I've said to lots of people, lots of times that I am open, honest and own my words. So here they are. To all of you that have made it this far...thank you!

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Reconnecting with a friend who made me her "hero"!

Growing up I lived in Ohio. I would spend about a month of every summer vacation with my Grandma and Grandpa Roger who lived several hours from us. As a kid it seemed like it took forever to get there. Though the drive was definitely worth it-I loved visiting my grandparents!

One of the perks of visiting was spending time with their neighbors including, Tammy, who was my age. I absolutely had a blast with her! She was one of my favorite friends. I wished that we lived closer and could have been able to see each other more than once, sometimes twice a year.

When I was 10 we moved to Florida and my grandparents did as well. Sadly, I didn't get to visit my awesome friend anymore and we lost touch. That is until a few months ago when we reconnected on Facebook after 25 years! As a side note, I am so thankful for Facebook. I have reconnected with so many people from all the different times of my life and places I've lived. I am also connected to people that I know now, too. It's really a great thing!

Since I had just recently reconnected with Tammy, she didn't know about my experience with Non-Hodgkin's Lymphoma. I was really surprised when I saw that she was participating in The Leukemia and Lymphoma Society's Team in Training. It's a charity sports training program that has raised a lot of funds to support various aspects of the blood cancers leukemia, lymphoma and myeloma. Click here on *Team in Training* to learn more about the program.

I told her that I had fought NHL, thanked her for participating in such a great cause and that I would be making a donation. She was shocked to hear about my experience and asked me to be her "hero", the person she is running for. That is such an honor for me!

Please check out *Tammy's fundraising page* and consider making a donation to help her reach her goal. All donations go to a great cause dedicated to funding blood cancer research and providing education and patient services.

Thanks!

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my tale of hair, baldness and hair again...

i had recently attempted to leave a blog comment for someone who has battled cancer and in the process lost her hair, spent time being bald and now has come full circle back to having hair. my comment ended up too long to be accepted and i realized that it was actually a blog and caring bridge post in the making. in the past i have tried to keep my cancer related posts on my caring bridge page where it's a bit more appropriate. for some reason though, i really felt like i should share it here as well. i have been sharing bits of my experience here more often. if it is becoming unfitting or uncomfortable to you all, please let me know. cancer is an awful subject. one that does need to be talked about. this may not be the place and i understand that. if you would prefer that i keep it more to my caring bridge page, please let me know.

it may seem odd or even vain and inappropriate to some, that when faced with a serious illness and not knowing if you are going to live or die, that hair would be on the radar at all. let alone be a big deal at that time. maybe to others it isn't or wouldn't be. as i look back and even as i think about it now, it was a big deal to me. now i didn't carry on about it a lot, in fact i tried to be accepting and brave. there were times though that i lost that calm demeanor. after all, i am a girl.

not quite three years ago i was faced with the fact that i was going to lose my hair to chemotherapy. i knew it, and that it was unavoidable. i was prepared. mr. h and i picked out various head coverings and even a wig while i still had my hair. i was even able to laugh about it at times with my family and friends. they were all (and still are) very supportive of me. i was ready for it. or so i thought.

the day my hair started to really fall out, as in handfuls, i cried. i thought i would be ok with it. but reality is cruel sometimes. mr. h went ahead and shaved it off for me. how hard that must have been for him. but he did it so that i could be in control.

i had told the girls that this was going to happen. i tried to prepare them as best i could. we shaved my hair off while the girls were in school, thinking that would be the least traumatic way for them. looking back, that may not have been the best way. or maybe there really was no right way to prepare them for it. bethany was so upset, she cried a lot and needed to talk about it. kelley may have been too, but she kept it to herself out of respect for my feelings i believe, i admire her bravery. such strong little girls-they were only 6 and 7 1/2 at the time. bethany has beautiful natural curls...that she did not get from me. i told her that maybe God would let my hair grow back in beautiful curls like hers. well, that seemed to offer her even the tiniest bit of comfort. and for the next several months she prayed and prayed to God about that.

i didn't dare go to their school once i lost my hair. but her class found out that i had lost my hair. maybe she told them or maybe the teacher discussed it, i'm still not sure how they found out. they made fun of her, well no, they made fun of me. it broke her heart that the kids were so mean about her mommy. it broke my heart that children could be so mean to my baby and that i had caused her such anguish. she was sad and embarrassed. i didn't blame her as i felt the same way.

everywhere in public that we went while i had my head covering on, bethany would announce to anyone who listened-why i looked the way i did. around the house if i took off my covering because it was uncomfortable, she would ask me to put it back on and i always did. mr. h and kelley would tell her to not announce my cancer in public or to not ask me to cover up. but i thought it was ok. anyway to help her deal with it. mr. h would lovingly rub my head every day. he did this for months, every single day continuing when fuzz appeared and even until i had grown quite a bit of hair. he also shaved his hair off when he shaved mine. we were bald together. and throughout my growing-out process he made sure his hair was always cut shorter than mine.

during the second month of my chemotherapy, i had to have heart surgery. well surgery to cut a "window" into the lining around my heart to allow fluid to drain out. the cancer mass was compressing my heart and caused my heart to start drowning in fluid. as the tech rolled me into the operating suites he had to have me take off my head covering, it wasn't sterile. i was mortified at the thought of being taken anywhere bald. the guy was so nice, he went into the OR suites and came back with one of those blue surgical caps that looks like a paper shower cap. the type that all of the surgical employees wore. that way i would fit in and not be left with my baldness.

after chemotherapy was completed, my hair started growing back as patchy fuzz. it didn't look very promising. it had no color other than some sort of a very light metal shade. it took several tries with hair dye to first get it to take the color and then to find a color that didn't look ridiculous. i was finally satisfied when i got it to a dark brown. i got my first haircut six months after the first fuzz appeared. just a trim that transformed my uneven purposeless style into a "pixie" cut. with a bit of hair product and finger styling it actually looked like i wore my hair that way on purpose.

and my hair continued to grow. two things were interesting...it stopped growing in as that awful colorless metal shade and started growing in the same color i had dyed it-which was not my original color. and it came back curly! bethany was so thrilled that God had answered her prayers! i was too!

the picture in my profile was taken a really long time ago. i've not had it cut since the pixie trim. it is long! and curly! and so much better than what i started with. i do need to get it trimmed and reshaped sometime soon, i think.

what a journey it was. i have a hard time remembering what i looked like with no hair. though i took many quick glances in the mirror during my baldness. i didn't want to look, but i couldn't stop looking. we have a couple pictures of me during that time with a head covering on of some sort. and some early hair growth progress pictures that only show a portion of my head. but there are none of "me" bald. the wig never got worn much, once when i met some online friends for the first time and anytime we went somewhere that the girl's classmates and friends might see us all together. it was uncomfortable to wear especially during summer in florida.

i still remember waking up each morning after dreams of having a head full of hair, thinking that the baldness was nothing more than a bad dream. then reaching up and touching my head feeling nothing but baldness. realizing that it wasn't a bad dream after all. day after day. i thought it would never grow back. that regrowing my hair would be the worst post cancer problem-which it definitely wasn't by a long shot. now it seems that it grew back so quickly, though then it felt like an eternity. the experience of cancer has changed me forever. and the experience of baldness has also changed me forever.

i now cringe whenever someone says in response to a person's bad haircut or when a child cuts their own hair and the parent is mortified (which bethany did do as a preschooler)..."it's just hair, it'll grow back". yes it does grow back, but those words have a whole new meaning to me now.

my biggest post cancer fear? of course it's that my cancer will return...but i think it's the baldness that i am the most dreadful of. maybe that's vain of me. thinking back to not having my hair, my "crown", it was hard. regardless of how baby fine it was or the cowlicks or the way it was straight everywhere except for one spot in the back that insisted on waving, i missed it terribly. i regained my hair and was blessed with a greater degree of beauty and i am so very thankful for that. sometimes i start to get annoyed when it falls into my face or when i have a lot of tangles to brush out. at those times i give myself a good silent scolding, because i am so happy to have my hair back.

when i lost mine, both girls, but especially bethany, had their hair cut into much shorter styles. bethany's curls have since grown out and it is so very long and pretty. she isn't growing it out to keep it though, she is growing it out to donate to locks of love or another organization like that. i'm not sure how long hair needs to be for a donation, but when i take her to get hers cut-i may get that much needed trim and cut mine for a donation as well. we can do it together.

with all of this rambling about my hair, i probably owe you all a picture of it as it is now. i really, really don't like to be on that side of the camera. however, i will try to get a good picture of my hair to share sometime soon.

thank you all for allowing me to share my forlorn but in the end triumphant tale of my hair.

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stuck.

because i don't think of politics all the time nor do i keep up with the political world all the time, the potential impact of ted kennedy's death never occurred to me. i feel silly admitting that. it just never occurred to me. what was in my mind was that it was a sad event and the end of an era. that's it. and really i only know of the concept of that era. i'm not old enough to have been around in the days of the kennedy prominence and greatness. i do remember when JFK Jr. died, it occurred while kelley was being born. i also remember when jackie onassis died, which now means more to me as she died of non-hodgkin's lymphoma. so even though i'm not old enough to know the legacy, the legacy has found it's way into my life in ways that i will never forget. so again, ted kennedy's death touched me and i thought no further.

that is until he was replaced. i don't need to explain why this stands out as important. you already know. now i realize the full impact. it upsets me, however, i can do nothing about it. except think and share my thoughts, as i've done before on the subject of health care. health care. it's something that i can't get away from. i've left the career field but the experiences and knowledge remain with me. the good, the bad, the people, the business, the inner workings. all of it...stuck. then the personal experience, being on the other end. having a diagnosis that will remain with me forever and will go on my permanent record. even if the disease is gone, it leaves it's mark physically, mentally, and again on my permanent record. all of it...stuck.

i woke up the other night with such strong feelings that i needed to pray for our country. the people in charge. the people, like me, who are not in charge. not knowing exactly why i was called to prayer. but i prayed. after that i was restless, i was thinking about politics. health care reform. and how it's inevitably and likely going to be...stuck. i wasn't able to fall back to sleep.

since then i've wondered why do i care so much? i am not one of the uninsured. i have private insurance and medicare. i've heard so many voices against reform, so they don't care unless it changes. i've heard that people who don't have insurance are not in need, they simply don't want it. if only those people knew what i know...but they'd never listen. so why do i care? are there actually people in our country who would desperately give to be insured but can't be? yes, there are. and so i guess that is why i care.

i've seen uninsured people denied care and they've died. i've seen people fall through the cracks and they've died. i've seen insured people lose their insurance because they got sick and they've died. but i guess that doesn't matter to so many who think things are just fine. things are just fine for me too. but i also know that my private insurance can dump me at any point because i got sick. it happens and there's nothing to stop them. i'd likely never get insurance coverage again because i have a pre-existing condition...on my permanent record. fortunately i still would have my coverage with medicare. the government run insurance program. the same one that most people gladly accept when they reach retirement age. even if they don't believe in government health programs. that's so ironic to me.

some have said that they don't want their great private insurance to change or cost more money, even if it meant everyone could be covered, and that is why they are against health care reform. wow. and i'm the one losing sleep. but i bet they don't realize how easily that great insurance could be lost. and how impossible it could be to find new insurance. people get sick. all the time. i've met enough people to know that non-hodgkin's lymphoma does not discriminate and it's considered a rare cancer. with each day everyone ages and the odds are really against us when it comes to becoming ill. heck, you don't even have to be sick to become uninsurable...i just found out that babies who are born prematurely get that put on their permanent record. yep, being a preemie can be considered a pre-existing condition.

so i ask myself why do i care? maybe it's the nurse experience. or maybe it's the cancer experience. or maybe it's just the bleeding heart liberal ways i have. whatever the reason, i care. not just about myself or just about my family or even just about the people i know, but for the unknown too. i try to rationalize my way out of caring and i realize i can't, i'm stuck. and with the passing of ted kennedy, any possibility of a feasible, realistic and workable way to health care reform is likely stuck too. am i the only one who cares? does this bother any one else?

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keepin' georgia on your mind!

wanted to share georgia and her blog with everyone. georgia is 10 years old and is battling leukemia. what a brave and strong girl she is!

also, she is hoping to get visitors on her blog from all 50 states and beyond. please stop by, say "hi" and tell her where you're from.

wouldn't it be so awesome to fill up georgia's map?!

http://keepingeorgiaonyourmind.blogspot.com/

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heartbroken.

dear, sweet adrienne has passed away. please visit her site and watch the beautiful tribute to adrienne's life.

loved by so many. forever. adrienne will never be forgotten. she fought the good fight for so, so long. no more pain. just peace.

my heart goes out to the boardman family. i'm so sorry.

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update about adrienne

if you haven't checked out adrienne's blog yet, i hope you will.

her mom alison does a excellent job keeping all of adrienne's "fans" updated.

the news hasn't been great. but this girl and her family are going to keep on fighting. if anyone can keep going through this, it's adrienne. i've mentioned how strong she is and it's so true. she a tiny girl but her strength throughout is impressive.

so, again please stop by and invest yourself into the healing of adrienne!

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just a couple of updates...

just a quick couple of updates...

first of all if you've been keeping up with adrienne's story, you know already that things are not going well. if you haven't been following please do:

adrienne's blog

adrienne and her family need all the support, love and prayers that you can give. she has been fighting the good fight for so long and has done so well-that i find it so hard to believe that her condition has declined so quickly.

also i have another update. some of you may have read the post i wrote about hillary and the link to an article that shared some of her trials along the way in her fight against hodgkin's.

after some deep thought i took it down as i didn't want people to mistake my intent of the message. my message was to show an example of our broken system. the example of the person who worked hard and did everything *right*. yes the system has failed her.

i was asked to repost the link to the story and i will. and i will also post her blog if you are interested in following her story. she too has had a decline in health and is now hospitalized.

the article about hillary

hillary's blog

hillary not only blogs about her illness, but offers a wealth of information about health care in general. i really respect her thoughts on things as she has had the opportunity to see things from both sides-as a nurse and then a patient-just like i have.

needless to say, it's a sad day knowing that two people i have gotten to know because of lymphoma are now struggling. and there is just nothing i can do...except pray and pass their stories along.

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coveting your prayers for adrienne...

wanted to keep you all updated on adrienne's condition. it seems she had a good step forward and then a couple steps back.

i feel so helpless. and because both adrienne and her mom alison have helped so many despite their own challenges...i want so much to help and need to help.

will be praying as always and asking you to do the same.

thank you...

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prayers for an incredible warrior!

please take the time to go over and visit adrienne's blog and not only see what a true warrior she is but also offer a prayer on her behalf.

adrienne has been battling hodgkin's lymphoma since she was 9 and that was back in 1996! you name it and adrienne's been through it. not only that but she has maintained an active life and recently even graduated from college...with honors! we are talking about a tough cookie here!

not only is adrienne special to me but so is her mom alison. i have never met someone who is such an advocate for not only her daughter but so many battling lymphoma. no matter what trials they've faced as a family, alison has always offered a helping hand to others. one of the most memorable times was when my dear friend kara was told by her medical team that there was nothing left to be done for her and in essence gave up. well that was not in kara's plans at all. alison worked with kara's family to find a doctor who wouldn't give up...and guess what- kara is now in remission!

sadly though, adrienne is having quite a struggle now. and i'll be honest i am very worried for her. so please take the time to read about adrienne and get to know her, leave a comment if you are comfortable doing so and please pray for a quick turn around.

thank you!

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National Marrow Donor Program - Be The Match Marrow Registry

National Marrow Donor Program - Be The Match Marrow Registry

Shared via AddThis

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as if you need a good reason to shop...

banana republic, gap and old navy are having a 30% off sale march 12th-15th call "give and get". they will be donating a portion of their proceeds to the leukemia and lymphoma society.

so mark your calendars and get your coupon and multiple use online code here for the big sale!

thanks to kelly and bekah for passing this along!

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isn't it ironic, don't ya think? a little too ironic...

for those of you on facebook-i'm sure you have noticed the tagging going on where you have to share random facts about yourself. as i'm reading about my peculiar...er interesting friends =), i have observed a trend among my awesome friends who have fought in the cancer battling journey.

now i have to throw a disclaimer in here: cancer is a horrible disease, i hate it, it ruins the lives of both those with cancer and their loved ones. there is absolutely nothing funny about cancer. and i'm not intending to make light of the situation.

that being said, when you are faced with crappy cancer-you have to make the best of it. you have to face reality that you might not be around for very long, you are being poisoned with chemotherapy and in some cases like mine even dosed with radiation. it's pretty miserable. but being human...vanity still exists. and it hurts too-especially when you find yourself bald. sometimes the only way to make it through the day is with humor.

a common thought is that cancer makes you sick which makes you skinny. right? wrong! i'm not sure about the treatments for all cancers but blood cancer treatments include very high doses of steroids. lots of them. there goes the hope for a slimmer you. i gained 15 pounds during chemo and was able to lose almost all of that during radiation. unfortunately though the steriods seem to really mess with metabolism. and without something heinous like radiation-it seems darn near impossible to get your body to normal and a comfortably smaller you. combined with some rare damage done to my body i have a problem with fluid retention and improperly draining veins. my upper body is freakishly out of proportion to the rest of me. so NOT cool. you would think that being bald would be enough-but nope bald and puffy. sort of like uncle fester. oh JOY.

so back to the facebook thing...many, many of us have the same complaint. cancer that made us not skinny, but plump. just doesn't really seem fair. for any of us. i do have to share that mr. heather tells me every single day that he only sees beauty in me. isn't that sweet? i don't believe him LOL, but he gets an "A" for effort.

BUT...not everyone is fortunate that i like i have been. i now have a head full of "natural" curls! something i've always wanted. bethany and God get the credit for that. bethany has naturally curly hair and was absolutely devastated when i lost my hair. i told her how much i really, really hoped that my hair would grow back curly just like hers. bethany prayed about it, a lot...and the answer was yes! i could not be more thrilled! though i will admit that i'm a bit unsure how to style my new hair. it was baby fine and ever so slightly wavy before. definitely i welcome any cut, styling and product tips for my new, thick curls.

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