First steps on a long journey

I will find strength in weakness
Grace in despair
Beauty in the commonplace
New aspects of normality through each trial that comes
For my loved one and myself.

I will journey through darkness and never give up

Help my patient endure when endurance is all there is

Provide love, patience and understanding

I will not be perfect
But I will allow myself my own humanity
Even as I struggle, each day to be strong.
Even as I wake each morning saying the same prayer;
God, please give me the strength to get through this day.

Posted in Caregiving | Tagged , , | 17 Comments

Breaking the Spell

Image by richworks on deviantART.

There are many kinds of spells in the world. Probably the most well known are magic spells where some claim to have powers to force changes in people, nature and situations. There are myths, fairytales, children’s books, novels and historical as well as Biblical texts that mention these types of spells. However, more importantly to the subject of this blog, there are the spells we cast on ourselves without even realizing it. They have nothing to do with magic, but they can block us from our own happiness, and they make us forget that we are worthy, accomplished and acceptable.

My mother has fallen under the power of a spell like that, and I did not realize it until someone else said the magic words.

Mom is doing great, I mean really great and yet she cannot see it let alone verbalize it. The physical therapist, the visiting nurse, the occupational therapist and a slew of other medical professionals can say it, but mom remains unconvinced.

It is frustrating. It is beyond frustrating. It is the kind of thing that almost makes me want to give up and finally, after all this time and struggle, say “Uncle!” However, I do not say it, because I am in this fight and on this journey until the end, and so here I am.

So I try everything from praising her, to teasing her and she does not budge in her beliefs that she is not doing well in the face of daily improvements.

I can see it, others can see it; mom is more mobile now than before the time she broke her ankle. All the physical and occupational therapies have been great for her, yet sadly, she cannot see it.

On Tuesday, her occupational therapist Roberta came over, and she praised mom for doing so well and I said, “I wish there was some way to make mom see it, because she doesn’t seem able to at all. I can ask her if she’s in pain and she’ll say, ‘Not now, but I will be,’ she sounds like Eeyore from ‘Winnie the Pooh.’”

We both laugh, and then without missing a beat she says the magic words, “It sounds like she’s afraid of breaking the spell. That if she says she’s OK something will happen somewhere and she won’t be OK anymore.”

The spell is broken, at least for me.

I get it. I finally get it; being sick; especially with cancer, along with being sick for a long period of time not only takes a huge physical toll on a person, but a huge emotional one as well. At first, mom was afraid to call herself a cancer survivor because she wasn’t sure if she would survive, and now that she has, she’s afraid to say she’s OK.

Thankfully, she has not given up. She is still fighting every day, and yes, improving. Yes, sometimes she’s afraid and needs some coaxing from me, but in the end, she continues on her journey.

Mom amazes me. She really amazes me. Her physical and emotional strength seem almost boundless, and this is another step that we’re going to make together. Someday soon, she will embrace being OK as much as she has embraced being a cancer survivor. I can’t tell her when and I have no idea how. I can only sit back and support her until she is able to break the spell herself.

Posted in breast cancer, Cancer, Caregiving, Coping, Mom, wisdom | Tagged , , , , , , , | 4 Comments

On Losing Hair and How Farrah Fawcett Prepared Me for My Journey

Well I have less hair than the last time I added anything here, and no, it’s not because I have cancer. It seems that taking care of a cancer patient or should I say; the stress of taking care of a cancer patient can lead to hair loss. Perhaps it’s just dealing with cancer and the side effects of cancer treatments – because really, my mom is usually pretty easy to care for – that is the culprit but either way, I have less hair.

My hair has been falling out for some time, and it finally got to the point where it had become a chore to try to fix it so that it wasn’t noticeable. So the last time I went to my hairdresser, I said, “just even it up and we’ll start all over again.”

At first I wasn’t sure if I’d like my new, shorter hair, but after all the compliments I’ve received, and the fact that it’s easier to care for, I’m beginning to like my new looks.

It wasn’t that easy for mom when she lost her hair. That was traumatic, to say the least. It happened right before mom’s second chemo treatment. Naively, we’d thought that we dodged a bullet because she hadn’t lost any hair immediately after her first chemo treatment. Our hairdresser had even given mom some special treatments to help prevent or at lessen her hair loss, but in the end, nothing worked.

It happened quickly, which made the loss so much harder for my mother to endure (notice I didn’t say bare). In just two days, it was gone. Every time she combed her hair, turned her head or did anything at all, there it was; clumps of hair falling out, not poetically but horribly, until there was nothing left but her barren scalp.

She mourned the loss of her hair – always one of her most beautiful features with its natural curls and glorious texture, more than her breasts.

It’s mostly back now, though a bit thin because for the drugs she takes to prevent a recurrence.

So what does this have to do with Farrah Fawcett? Well, the iconic image of her is how many of us remember her. All teeth, breasts and glorious hair, she was a constant reminder of who I’d never be when I was a teenager. Let’s forget my feeble attempt at wearing my hair in her signature style. Let’s just say, I was suffering from teenage angst. Let’s also say, I was never much of a fan of hers until I’d grown past my insecurities and into myself. Then I was able to see the actress beneath the mane. I loved her as Barbara Hutton in, “Poor Little Rich Girl: The Barbara Hutton Story,” and as the woman who killed her abusive husband in “The Burning Bed.”

So again, you ask, what does this have to do with Farrah Fawcett?

Well she got cancer, anal cancer to be precise, and sometime during her journey, she began to document what she was going through. It aired on NBC, Oxygen and Bravo and I watched it repeatedly without let up for weeks. I searched for it online to find viewings. It wasn’t a lurid fascination that prompted me, but more of a reverence for Farrah’s honesty and courage to share so much of herself and her struggles. She could have remained silent, only allowing the memory of her former self to remain fixed in our minds, but instead she chose the road less traveled and in that decision, me, the girl who hated her for representing all that I wanted, but could never be, found myself seeing her as so much more than that other image. She’d become my hero, and I wished that I could embrace her in some way beyond the tears I shed as I watched her battle the cancer which would ultimately end her journey.

The documentary, “Farrah’s Story” first aired on May 15, 2009, and when I originally saw it, mom hadn’t yet received her cancer diagnosis. Some might say that I had a precognitive reckoning about it and was drawn to watch it because of that. I think that viewpoint cheapens what really happened. I was drawn to it, because that kind of courage is a rare and wonderful thing, and also because finally I saw the woman behind the image and I loved what I saw. Obviously, there were aspects of her journey that are different from mine, but you can say that about anyone’s cancer journey really. The only thing she endured that most don’t, was the paparazzi and media constantly intruding on something so private, even going so far as to access her medical records. That aspect of her journey still angers me, and I wish that we lived in a world which such things didn’t occur.

I remember one of the doctors mentioning that they’d given her a weaker form of chemo to save her hair, and how finally it was decided to go with something stronger. That revelation staggered me, and I remembered when mom began going through chemo how the thought of Farrah and her hair, and how much possibly the need to save it may have cost her her life. To be honest, I can’t say that for sure, she had Stage 4 cancer, which means that it had spread through her system, but that thought stuck with me nonetheless.

The footage of her without her hair was jarring, but just the same, she made it OK, which ultimately made it OK and easier for me when mom lost her hair. Kate Jackson, one of her costars from “Charlie’s Angels” said this about her in the documentary, “Hair or no hair, she’s still Farrah, and the great thing is, I never heard her complain once.” Here’s what someone else said, “She wasn’t as upset as I thought she would be,” said while an image of Farrah looking at herself and her thinning hair in a mirror and laughing.

Again, these words and that image stayed with me and comforted me when I had to deal with the same things with mom.

Besides that and much that sustained me, you have no idea how profound that was for me, who had always envied her hair because I’d always had so much trouble with mine. You see, this isn’t the first time in my life that it’s fallen out from stress. My childhood also took a toll on my hair, so that by the time, I was a teenager and seeing Farrah’s image for the first time, it was an awful mess. When I was a child, it had been long and beautiful, then it had thinned out and the texture changed until it was an impossible mess and I was left feeling like the ugliest thing on the planet. This all happening when most girls deal with self-esteem issues.

Farrah finished her journey on June 25, 2009, and mom received her diagnosis just a few months later.

Thank you Farrah for helping me prepare for our journey as you were finishing your own. Thank you for your beauty, courage and strength, and also, quite sincerely, thank you for your hair and for making my mom’s loss and also mine, a lot easier to endure.

I invite you to watch this portions of “Farrah’s Story,” by clicking the video below…

Farrah’s Story, Part 1 and Farrah’s Story, Part 2

Sadly the full documentary is no longer available online, but it is available for purchase.

Posted in Abuse, breast cancer, Cancer, Caregiving, Coping, hope | Tagged , , , , , | 2 Comments

To Be or Not To Boobie

Image of Carey, from The Scar Project. Copyright 2011 © David Jay Photography

To Be or Not Boobie

One of main themes of this blog has and always will be, making a cancer journey. As I see it, everyone who either receives a diagnosis or takes care of someone who has received a diagnosis, goes on a journey, and no two journeys are the same.

For instance, during the many months I spent practically living in an infusion room (where chemo is administered) I got to know a lot of different cancer patients and caregivers, each one with their stories, each one with their own journeys. None of those journeys is the same, nor is any more valid than another.

The same goes for breast cancer or any kind of cancer awareness programs.

I’m sure most are aware of the pink ribbon campaign, but what some of you may not know is that this is also a controversial campaign. While many wear the pink ribbons, buy pink ribbon merchandise or post pink ribbon images online, as I do, many find those images offensive. Some of the reasons for this include, that breast cancer isn’t a pink, frilly thing, but a serious disease that kills thousands of women, and yes, men each year. Another reason is that there has been some doubt about how the funds donated to organizations, such as the Susan G. Komen, are really used. I got into quite a heated discussion last year with a breast cancer survivor who was vehemently against the pink ribbon campaign. She raised many valid points, but in the end, we agreed to disagree, and we have remained friends.

If you are interested in learning more about the pink ribbon campaign, I recommend this website, Pink Ribbon.org. By the way, I am in no way affiliated with this organization, outside of sporting pink ribbons on my Facebook avatar and on this blog.

Think Before You Pink and Cancer Sucks are two organizations that sprung up in opposition to the pink ribbon campaign. Many cancer patients and caregivers are grateful to have an alternative to the pink ribbon campaign and proudly wear “Cancer Sucks” buttons, t-shirts to demonstrate how they feel and to separate themselves from the pink ribbon movement.

There are also those who do neither and find other ways to empower themselves on their cancer journeys. As I said before, there is no “one way.” It’s your way and if it works for you, it’s valid. To be honest, the pink ribbon thing isn’t really one I advocate, but my mom loves the pink ribbons and is completely unaware of the controversy, so I use the ribbon online out of respect for her.

Then there is The Scar Project, which posts, “Breast Cancer is Not a Pink Ribbon” on their masthead. If you haven’t visited this website, please do. In it, you will find raw, yet beautiful photographs of women who have had mastectomies. I’ve posted one here as an example.

Some of my friends take part in Boobie Wednesday on Facebook, Myspace and Twitter. What is Boobie Wednesday? Well each week on Twitter women display photographs of their cleavage to as a reminder for to others to do their monthly self-exams, as well as support breast cancer awareness. Many women find it empowering to display photographs of themselves after they’ve had a mastectomy to show that they are still beautiful without breasts. I’ve seen those photographs and they are truly beautiful. Boobie Wednesday was started by a woman, who has since become a cancer survivor, as a fun way to support breast cancer awareness and education.

As it says on the website, “ Don’t be scared, be self-aware and self-exam monthly.”

Whether you agree or disagree with their methods, you can’t disagree with their message, yet this seems to be a problem for some. Some are cancer patients and survivors, and some are just offended by the images and motives of those who take part in Bobbie Wednesday. While some women feel empowered by this, others are not merely offended, but sickened, hurt, etc., but here’s the thing that some seem to forget, both sides of this issue are equally valid. Besides that, if you don’t want to see the images, then don’t go looking for them. It’s that simple.

Have I taken part in Boobie Wednesday? Only as a blogger when I was asked to write a guest blog after my mom was diagnosed with breast cancer two years ago, but no, there are no photos of my cleavage anywhere for anyone to see. Is it something I would ever do? Nope, but that doesn’t give me the right to judge or write demeaning things about those who do.

Every woman who receives a breast cancer diagnosis has the option to get breast reconstruction. My mom was offered it and she was 78 years old at the time. She chose not to, but many do. My mom’s surgeon told us about one of his patients who at the age of 90 got full breast reconstruction. Does that mean that my mom and others like her, who chose not to have breast reconstruction have the right to put her down for doing so? No, because it’s her right to make the best decision for herself, just as it was my mom’s right to the very same thing.

The bottom line is this, according to BreastCancer.org, “In 2011, an estimated 230,480 new cases of invasive breast cancer were expected to be diagnosed in women in the U.S., along with 57,650 new cases of non-invasive (in situ) breast cancer.” So whether you like or dislike pink ribbons or photos of post-cancer survivors or women with cleavage, take the time to educate yourself about breast cancer and remember to it’s not your place to judge anyone else’s cancer journey.

Just walk it and know that you’re not alone.

Posted in breast cancer, Cancer | Tagged , , , , , , | 8 Comments

Isn’t It Always Something?

And the answer is a wholehearted “yes.”

Quick summation of this past week:

1. Mom is home, and she was stoned out of her gourd on pain pills on her second day back.

2. My 81-year-old mother was stoned on pain pills.

So yeah, mom’s home now and that’s great. At first, the thought of this made me a nervous wreck, because after all, I was more than a little freaked out about a recurrence of any of the events of that last awful week. Thankfully, one of my friends made me realize that I was wasting time and energy worrying about things of which I have no control.

Besides, I know the signs now, so if mom gets sick again, I will know how to handle it better than I did before.

I think mom was nervous about coming home too. Though I’m grateful for the care she received, it’s very clear that the staff made it very easy for mom; too easy in fact. True, she had a couple of hours of physical therapy in the morning and a couple of hours of occupational therapy in the afternoon; mom was able to push a button and get what she wanted without having to get up and get it herself.

There are no buttons like that at home.

There is just me, and I can only do so much.

So we had a rough couple of days as we both readjusted to living under the same roof again. Mom no longer expects me to run when she calls, and I no longer expect her to stop calling me, even if I don’t run.

We’re an interesting pair.

So on to the reason for this blog; the day I called 9-1-1, because I wasn’t able to lift mom off the floor, one of the EMTs accidentally hurt her arm. I do not blame the EMT, because things like this often happen in emergencies. I remember when I was getting my certification for the Red Cross, the instructor told me that people frequently sustain broken ribs when EMTs administer CPR or do the Heimlich Maneuver. The reasoning being; that it’s better to accidentally receive a broken rib than to die.

So mom’s arm, well really her rotator cuff, were injured and she’s been in agony every since. The staff at the rehab center took her to get an x-ray, which showed that nothing was broken, but beyond that, they didn’t do much besides having her do occupational therapy for it and applying heat.

When mom broke her ankle in February, she was given a medication that increased the effectiveness of the pain meds she was on. The medication in question isn’t a pain pill, and isn’t addictive, but the idea of taking something that makes a pain pill stronger than usual, probably is.

She hadn’t taken that pill since she went to rehab three and one half weeks ago…yeah, you know what’s going to happen next.

So mom comes home, and all’s well until Tuesday, when the visiting nurse came. Mom was so groggy she could barely keep her eyes open. She seemed listless and just plain out of it. Obviously, the nurse and I were both concerned about this and repeatedly questioned her about how she was feeling.

In my frustration, I wondered out loud if mom hadn’t taken the pill I mentioned earlier. Mom insisted that wasn’t the case and continued to poo poo me, until the nurse, lord love her, said, “you know, I would prefer it if you would admit to taking the pill, because if you’re this groggy without taking it, then something’s very wrong.”

Mom’s response, a classic in the annals of passive aggressiveness; “Well I may have taken it.”

If you can imagine my head turning into an H-bomb and exploding, that pretty much pictures how I felt in that moment. I also felt relieved, because I knew that eventually the pill would wear off, and mom would return to being her lovely old troublemaking self.

Did my head just explode again?

And the pills, they are gone. Let the rats and sewer alligators get stoned on them. Mom’s druggy days are officially over.

“Bombhead,” archival pigmented inkjet, acrylic paint on paper, by Bruce Conner

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Losing My Head and Finding My Voice

It would be too easy to call this entry, something negative ,” but in truth, with all that I’ve been through, I can honestly say that I feel blessed.

Mom fell again two weeks ago Monday. She hadn’t recovered her strength and I was feeling increasingly frustrated because of that. I had done everything from making changes to her diet, pep talks and threats of more physical therapy, but nothing made a difference. This was combined with my continued lack of sleep and all around exhaustion.

So when she fell, I had a meltdown. I started crying and babbling, and even though I felt miserable, I also felt good.

You see, I haven’t cried – well had one of those cathartic cries where you release pent-up poison – since mom’s cancer diagnosis. So yes, it felt good . Of course, it didn’t help mom much because she was still on the floor.

Thankfully, my friend Diana came over and helped mom get up, since I was too much of a basket case to do anything but cry.

That was how the week began.

By the end of the week, mom would be in the hospital after three more falls, no more meltdowns from me, but the realization that mom’s continued weakness and falling signaled something beyond changes to her diet and pep talks.

So I called 911, and after many hours of testing, they found out that mom was suffering from a bad UTI (urinary tract infection). The doctor said that falling commonly occurred as a symptom of UTI in older patients.

Who knew? I was imagining the worst possible scenarios, so I can honestly say that both mom and I felt blessed to find out that her problem was treatable, and that she’d be home after getting some physical therapy to get her strength back.

As I said, this happened two weeks ago, so it has given me time to reflect.

I am not the person I was before mom’s diagnosis. I don’t like confrontation, but I have learned to push past that dislike and confront both people and situations head-on. This came in especially handy when I met the doctor who was scheduled to treat my mom at the hospital after her fourth fall. It was the same doctor who, when my mom was in the hospital last September, gave us such a bad time.

I didn’t write about this at the time, because when all of this occurred I was too busy to do so. Now, after all these months, here goes; Mom had become very weak one morning, so another friend and I took her to the emergency room. The doctor decided that mom was suffering from a very low blood sugar, but of course, they had to do more testing to be sure. Nothing was conclusive, so mom was taken to a room for observation.

In comes another doctor, who after briefly introducing herself announces quite flatly that mom has had a third heart attack. Obviously shocked, my mom says, “no!” The doctor, one who clearly has a very high opinion of herself, responded, “yes!” This went back and forth for over five minutes with me sitting in the corner trying not to gastrically explode. I mean seriously if the doctor thought mom was having a heart attack, why would she argue with her and get her more upset?

Finally the doctor, who I will refer to as “Dr. Yes/No,” left the room.

Now mind you, mom was in a normal patient room without any sort of heart monitors or special care, which made it seem as if they ER doctor wasn’t concerned about any heart problems, but merely wanted to observe her to monitor her blood sugar.

So the next thing we know, Dr . Yes/No walks back in and announces that because she’s had a heart attack, mom is going to be transported to another hospital that has a special cardiac unit. I remained calm, because I had to, and because mom was clearly upset. Saying anything at this point, would have only made it worse for her, and that is something I refused to do.

So all the the ballyhoo transpired that is necessary to transport a patient from one hospital to another, and we were both happy to bid adieu to Dr. Yes/No with the hope that we’d never have to deal with her again.

Long story short, mom did not in fact, have another heart attack. Dr. Yes/No was wrong, and she had upset my mother for no reason.

So here, we are two weeks ago, and mom is in the ER and who walks in? You got it, Dr. Yes/No, who promptly asks me (in the hallway), “So did your mother have a heart attack when she was here last?”

My eyes bugged out of my head like a cartoon (at least, that’s how it felt.)

I said, “No,” this was followed by a barrage of questions from Dr. Yes/No about my mother’s heart condition and nothing about why she was currently in the hospital for treatment. She was clearly frustrated to find out that mom hadn’t had a heart attack, which undoubtedly meant that she was mistaken. Of course being the type not to take this well, she got one more dig in, “Well the UTI could be caused by her heart.”

And this is when my head exploded.

I didn’t yell or react outwardly, but what I did do was have Dr. Yes/No removed from treating my mother.

There is a process to doing this, which seemed long and exaggerated while I was doing it. I spoke to more people than I can remember until finally I was assured that Dr. Yes/No would be removed from my mother’s case. Of course she didn’t leave before going into my mom’s room and confronting her when I wasn’t there, but thankfully mom told her the reason why we asked to have her removed, and poof she was gone.

So yes, it’s been a tough couple of weeks. Currently mom is in a short-term rehabilitation facility where she continues to get stronger each day, and I’ve gotten some much needed rest. So yes, I can honestly say that blessings abound.

Well for everyone but Dr. Yes/No.

 

The image is by Maggie Taylor, Mood Lifted.

Posted in Cancer, Caregiving, Coping, exhaustion, Friends, hope, Mom | Tagged , , , , , , , , , , , | 2 Comments

Finding My Footing


I haven’t written anything in forever and it’s not writer’s block. It’s more life block if there such a thing. I am depressed and have been like this for quite some time. Perhaps it stems from my constant exhaustion or perhaps it’s just because life is tough and depression happens sometimes. Either way, I find myself once again having to find my footing; thus the name of this blog post.

There have been many times over the past months when I’ve wanted to write something about this or that, but I felt immobilized to do so. Depression is a funny thing, well, at least mine seems to be. Sometimes I am like I am now, where nothing brings me joy and I feel unable to do much but sit and stare at the walls, but there are other times (such as when mom was undergoing cancer treatment) where I kept myself constantly busy while battling my constant sadness. I have no control which form will come, but I’ve been here before, so there’s no need to worry.

I’ve been dealing with depression for most of my life, it being part of the residue of surviving an abusive childhood. Most of the time, I just feel slightly grey. I can be happy, but it’s as if something is veiled. It’s most manageable then and how my depression typically manifests.

This is more profound, but I’ve weathered deep depressions before.

So let me tell you what’s been going on outside of complacency. Besides being depressed, my other ongoing battle with insomnia has worsened. It’s now a habit for me to be wide awake to greet the dawn before having even one second of sleep. Because of that, I end up sleeping for most of the day, and waking up from that kind of sleep isn’t restful. It feels like a daily dose of defeat each time it occurs and sadly it occurs quite often.

However now I don’t have the luxury of days spent sleeping. Mom fell and broke her ankle in February, so I’ve been back in full-time caregiver mode. So now whether or not I get much sleep, I have to get up and help her. Now don’t get me wrong, this is in no way a burden. I’m grateful to be here and mom is doing great. That alone has helped to lift my spirits. Just the same being a primary caregiver while fighting for your mental health isn’t easy.

In fact, it feels almost impossible.

So I’m sitting here after another sleepless night writing this. My first blog post in forever.

It won’t be the last and I’ll try to do this as I did before, but if not, please know that I’m OK. I’m just trying to figure what my next steps should be.

This journey continues. It’s a long one, but even though I’m struggling, I would rather be here where I am right now, then where I was two years ago when I began.

Posted in Caregiving, Coping, Depression, exhaustion, hope | Tagged , , , , , , , | 11 Comments

All the Little Children

I’m working on a manuscript of poetry that deals with my childhood and the abuse I endured. Needless to say, my past isn’t always an easy to revisit. Sometimes it’s depressing, because it was definitely depressing and other times it’s empowering, because I had the strength to survive it.

So many children don’t and this is something that always pains me. Years ago, I wrote a poem where I wished I could be the last survivor of child abuse. Of course, I knew that wasn’t possible, but still, I wish it was. I’m sure that adults who survive cancer feel the same way when they hear about children who don’t make it.

Recently, I heard about a little boy in England, named Harry Moseley who died of brain cancer. He was only eleven years old, but in his short life, Harry managed to raise £85,000 or $137,000.00 for brain cancer research. He did this by fundraising and selling hand-made bracelets.

Here is Harry’s website if you’d like to contribute to his efforts – http://www.helpharryhelpothers.com/

Harry Moseley was a true hero, but I’ve seen the faces of children going through similar hardships, and they are all heroes too. These young heroes teach us all a wonderful lesson. Life isn’t always about what we make of it, but how we endure it. We are all sometimes forced to face things we’d rather not, but sometimes there is no other choice, but to face them.

Of course, Harry did more than face this problems, he found a way to help others. In a much smaller way, that’s what I’m hoping to do with my book.

God bless you Harry and God bless all the other children in the world who face the ugliness that life sometimes gives us, and do it with hope and a smile.

Posted in Abuse, Cancer, children, Coping, Death, Depression, hope, laughter, Survival, wisdom | 2 Comments