I’m Still Here, Honestly

“I’m Still Here.” Elaine Stritch first sang it on Broadway in Stephen Sondheim’s musical, “Company,” and Shirley Maclaine sung it in the movie, “Postcards from the Edge.” It’s a fitting song to describe me and this blog, because, I am still here.

I know it’s been a couple of months since I last wrote anything here, but I have been on one roller coaster of a ride since my last post. Don’t worry, mom is fine – better than I ever hoped really – but me, that’s another story.

I have a nodule on my thyroid, had it for years, but in March for some unknown reason it became a problem. I could feel it constantly and it not only affected my voice, but also the way eat, breathe, everything. So naturally, I called my doctor who felt it and decided that I needed a thyroid scan and possibly a biopsy to find out what was wrong.

And naturally, I freaked out a little.

I know you haven’t heard me say this before, but yeah, sometimes I freak out. After the year I had and all the times I didn’t freak out when I easily could have, I figure I was due.

I didn’t throw fits or cry, but I started to feel anxious all the time. I couldn’t sleep, didn’t eat and felt generally miserable. So a lot of things started suffering, including my job performance. Now that was my real wake-up call, because I’m one of those people who always demands the best of myself. To be find out that what I considered was my best really wasn’t, was a kick in the head.

Thankfully my bosses know me and have been nothing but understanding. Just the same, it kind of killed me a little, so I decided to take some time off and concentrate on taking care of myself, because clearly I was having health issues and clearly those health issues, combined with my own stubborn drive and determination were affecting me.

And also because in all honesty, I hadn’t been taking care of myself.

I was great at taking care of mom, but taking care of me had not only taken a backseat, but it was in another car.

I began taking naps, which was something I rarely allowed myself to do during the entire time mom was undergoing cancer treatment. And it was during this time I finally realized just how exhausted I really was. That sleep felt like it had been blessed by angels and began to feel somewhat better, even though I was still dealing with the nodule.

I had the scan and it took over two weeks to hear anything back. I called my doctor to find out the results and he suggested that I just go ahead and have a biopsy anyway. This didn’t make sense to me, so instead I called a friend who is knowledgeable about vitamins and herbal treatments. She brought me some herbs that are supposed to help regulate your glandular system and some other ones that did something else. Within a few days I couldn’t feel the nodule anymore. To this day, neither my doctor nor my friend, know what the problem was, but the bottom line is that I didn’t have to have a biopsy and I don’t have cancer.

During this time, my doctor’s nurse practitioner  noticed a mark on my back that turned out to be a pre-cancerous lesion. I had that removed last month, with no freaking out at this point. The doctor who removed it was possibly the best doctor I have ever seen. He really put my mind at ease so that I felt that I was receiving the best care possible.

Now I am facing a more serious surgery to remove a grapefruit size tumor that was found during my regular GYN visit. I’m not nervous about this at, but needless to say, I am still feeling quite exhausted, and no wonder, right?

It honestly feels like mom and I haven’t had a chance to really relax after everything from the past year, but who says that we or anyone automatically gets time like that? I look at the news and realize that mom and I are both extremely blessed. Even with all we have dealt with and continue to deal with, we are OK.

Mom has been nothing but amazing. For over a year I have made all the meals and did the cleaning and she just took over for me. Let me say that it feels absolutely great to be taken care of by her. At times I felt like a little kid and it was nice to see her so strong and able again.

I got behind in writing here, because besides that I edited two books that I’m quite proud, and also because there were times when writing my name sapped my strength.

So yeah, I’m still here.

I think it’s time I learned the lyrics to that song.

The thing is, in addition to that song I also need to find some other lyrics to sing. Because the truth is, that life doesn’t always give us a break. Dealing with cancer, bad health or anything else doesn’t give you a pass on other life issues.

Think of all those who have survived some of the earthquakes or tornadoes we’ve all heard about on the news. It’s not like those people were all living perfect and pristine lives and then something horrible happened. They were dealing with all of the same life struggles we all deal with and then and in addition to all that, something horrible happened.

So yeah, I’m still here, but I’m also grateful and very well aware that even though things aren’t what I wish they were, they could definitely be worse.

By the way, I wrote this post in May and it’s taken me this long to post it. This is how insanely fatigued I have been.

I’ve had my surgery. The grapefruit size tumor grew to the size of a soccer ball. Even though it was a fast-growing tumor, it wasn’t cancerous. One of my workmates said that anything that large deserved a name, so I named it “Wilson.”

I will be back more regularly now. I’m recovered and growing stronger each day.

I am still here, but Wilson isn’t.

 

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Posted in breast cancer, Cancer, Caregiving, Coping, exhaustion, hope, Mom | 3 Comments

Taking Off My Cape

superman-earth-one-symbol-1

This week I received a wake-up call. I am not Superman. This realization has come after more than a year of pretending that I was a caped crusader, able to do anything without exhaustion or need. I took care of mom, while managing to not only do my job, but receive a promotion and special projects, while also managing several blogs, working on my writing and editing for private clients a little bit here and there on the side.

Looking back it all seems crazy now, but that is what helped me cope throughout this last tough year. You see, mom was in bed a good deal of the time recovering from surgeries or cancer treatments and I was left with nothing but this awful silence that I felt compelled to fill. In those moments, my thoughts often led me to fear and I knew I couldn’t allow myself to succumb to them. So I filled my time up with work and other tasks to force myself to be too busy to think of much else.

Thankfully, during that time mom recovered, but I have not. I never stepped off the treadmill I had placed myself upon. I told myself lies that I was fine, even as I continued a struggle that only seemed to worsen with time. I never took one day to simply rest, but continued on as if I was a caped crusader.

Well I’m not.

But even so, I needed someone to tell me that. I was too bull-headed to ever admit my own defeat, especially when what I was defeated by is my own bull-headness. Well I received that wake-up call last week. My health is not great and I haven’t performed as well as I normally do on my job.

This is so unlike me. I pride myself on doing great work while managing several things at once, but I have not been myself for a long time. Instead I have tried to be this person who could do anything that was expected of her without any sense of her own needs or humanity. I felt that’s what I had to be to help mom. After all that is who Superman is, leaping over buildings in a single bound without getting a scratch. Well, I had to not only help mom leap over every obstacle to her wellness, but also hoist myself over them too.

I know I’m not alone in this. I’ve seen other caregivers make these same choices. We are in an impossible position. Caring for someone you love as they undergo painful treatments or catastrophic illnesses is horrible. True, there may be good moments and hopefully, your loved one will recover, but still there is an uncompromising fear that you must do battle with on a daily basis, even as you strive to remain cheerful and untouched.

So we sit in waiting rooms holding our loved ones hands, exchanging pleasantries or pretending to be interested in jigsaw puzzles while combating our own fears. Or we go home and tend to whatever day-to-day necessities are required to help our loved ones. We do this while exhausted, in tears or with smiles, but most of all we do this from love.

Every time mom has an appointment with her oncologist, I am afraid until I hear that she is fine. Even now that they say she’s cancer-free and my fears should have subsided, it is as if, I have forgotten how not to be afraid. I think it will take me some time to learn how to stop being afraid. Cancer is a pretty scary thing after all. It creeps into your life without a sound and can just as easily return.

Superman is the only superhero who had to remove his outward clothes to reveal the truth of who he really is. Though I am not superhero, I too, must reveal the truth about who I really am.

I am strong, but I am also weak.

It seems that I am human after all.

Posted in breast cancer, Cancer, Caregiving, Coping, exhaustion, Friends, hope, Mom, wisdom | Tagged , , , , , | 6 Comments

Of Butterflies and Books

I know I’ve said this before, but this is going to be a short post this week. (Of course short for me is usually around 300 words) I have a lot of things going on in my life right now and yes, most of them are good. I’m editing two books right now, so those projects are going to be taking up a lot of time. I will still post something here every week, but right now, I’m feeling a bit overwhelmed. I’m sure as soon as I get into my projects and figure out a schedule, I’ll feel better, but right now…wow.

Things are going back to normal again. Mom is doing fine and so am I, so for right now, everything is fine. Troubles come and troubles go, we endure, we survive, we become weak and worn out and then we embolden ourselves so that we can carry on the best that we can.

There is nothing more we can ask of ourselves than that.

One day at a time, my friends, which makes me remember the “Serenity Prayer” that my father used to recite. He learned it in AA, but it contains some real words of wisdom.

“God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.”

I’m not a believer in repeating the same prayers day after day, but there are some elemental truths in these words.

We cannot change cancer. We can fight it and hope we survive. We can change our attitudes and how we deal with things. We can even change our lifestyles in hopes of preventing cancer or other ailments. Of course, the bottom line is having the “wisdom to know the difference,” between what we can change and what we can’t. I can’t bring back my father or mend the relationship we had, and I can’t make my mom’s cancer go away or her breasts grow back, but I can decide to do something proactive for the cancer community, which is part of the reason I write this blog every week.

There is something in the offing here, but I’m not going to announce it just yet.

So back to wisdom. Many of us forget to be wise. I know I’ve forgotten it on more than one occasion.

For me, right now my wisdom comes from knowing that I need to step back from a few things, so that I can work on these projects, while having the energy to take care of mom and myself.

I’m feeling hopeful, which is great. It’s been a long time coming. I feel like a butterfly who is easing out of its cocoon.

I wish us all the serenity of those words, along with hope, strength and wisdom.

Have a great week.

Love,

Rachel

Posted in Caregiving, Coping, Dad, hope, Mom, wisdome | Tagged , , | 8 Comments

The Windswept Seas of Mourning

I used to believe that grief and mourning were processes that only lasted for a set amount of time. I have no idea why I believed that, but I think it’s a holdover thought from my childhood, when I felt emotionally more resilient than I do now.

I say “felt emotionally more resilient,” but in truth, I know I’m stronger now. Back then, I hadn’t gained the courage to feel my emotions. I have that courage now.

Nothing ever seemed to affect me in those days, even though clearly it really did. I didn’t cry when I was abused. I didn’t cry when my grandmother – who I loved more than anyone – died. I didn’t cry about anything and existed in a perpetual state of numb. I’ve had years of healing and therapy that have shown me that my non-feelings were not the norm, and in fact, were pretty unhealthy. But that is what I knew, and that is how I survived. I essentially had to act my way through my childhood because my home was dominated by an alcoholic parent who could sometimes turn abusive. He was the child in our house and I was sometimes his parent. My mother, who ended up having a nervous breakdown from all the turmoil of our lives then, ran the gamut from being emotionally shutdown to raging through the house like a thundering she-devil. In those moments, dad was a little wounded boy and I was the one who safeguarded him. I was to play that role here and there throughout our lives, until the day he died. It was me, after all, who told him to go to sleep that last day and gentled him off to that long, great goodnight with the words, “don’t worry I’ll take care of mom. Go to sleep now, daddy.”

How many times had he sent me off to sleep with a similar sentiment?

“Go to sleep Rachel, there are no monsters under the bed or in the closet. Remember daddy always loves you.” (That’s the goodnight I got, if I was lucky.)

I said that part too that last day. I told him I loved him and what a journey it was from those words back into my younger self, who felt nothing and didn’t cry.

I don’t remember telling my father I loved him in those days. I do remember questioning if I did love him at all, which is an odd question for a child to ask herself, but there you have it. That is what living in an abusive household is like. You are forced, beyond your years to navigate odd roads of reason in an attempt to make sense of your situation; in order to survive.

I can remember the thought as clearly, as if I was back as my six-year-old self, already feeling weighed down by life. “Did I love mommy and daddy because I really loved them or because I was expected to love them?”

Yeah mom was in there too, because I was too young to understand what she was going through and also quite angry with her for abandoning me so much of the time. She was either not there or chose not to see a lot of what went on, and I was left alone to deal with it.

So yeah, mom was in that question too.

Now here I am, and I know what the answer to that question is. Yes, I love them and no, it is not because I have to. It is a choice. I will not say it was an easy choice, because it wasn’t. I had to learn how to love them, and in that act, I also had to learn that I had the right to set boundaries and make my own rules for whatever that love was to be.

I’m not talking Hallmark Cards here.

This was something uniquely my own and of my own creation.

Emotions are roads that we must navigate for all of our lives. We do not stop until we are either completely shutdown or die. And in this journey, along with learning that I loved my parents was the lesson of learning how to love myself. Actually, I think that lesson came first, and as that grew I was able to extend it more fully to them.

Years ago, I couldn’t hug anyone. I didn’t want to be touched by anyone, even if it was in friendship. I couldn’t decipher good touch from bad, and was repelled by any hugs, except when they came from my mom. I had a friend who used to stand in front of me with open arms and allowing her to hug me was a completely uncomfortable thing. In those days, I was not only removed from my emotional self, but my physical self as well. That is not who I am in any way now.

I embrace all of my friends with a freeness I never had then, and I can’t tell you when it began or why. It just simply is and I think God that it is so.

So here I am today, mourning the loss of my dad and learning that grief has no time limit. It comes like waves that just hit you and then roll back, and that process returns and ebbs and flows from day-to-day. You may wonder what I am mourning since I have mentioned how he was abusive; well I am mourning the father who wasn’t abusive. I didn’t often see him until he was up in age, but he’d make an appearance every now and then and it was wonderful. I could never trust how long he’d stay, but it was usually great when he was there. Of course sometimes those visits were short-lived, because my father would say something hurtful or inappropriate that sent his better self away.

So, I had to be on my guard with him or felt that I had to be, because that was just the nature of our relationship. I never felt completely safe with him and he always gave me reasons to justify those reservations. So, yeah I’m mourning him, but I’m also mourning the fact that because of choices he made, we never had a normal father/daughter relationship.

Sadly there are things you can’t return to and make up for in the future. I lost a spelling bee in the third grade, well I have won other prizes since, but I can’t win a new father and I can’t relive my life in hopes of fixing all that was lost.

And here it comes, another wave of mourning as I stand here on the shore feeling the mist of the salty air upon my face. It feels like I’ve been cast adrift and though I know I will eventually find my way back upon the shore, right now, I don’t feel quite so hopeful. Right now, it feels like I can’t find my footing and I don’t want to float out to sea.

Maybe, I’m mourning myself too. Mourning the loss of my childhood that died too soon. I will get through this. I will find my way to solid ground, even as the sea beckons me to look back upon it’s windswept shores.

 

Posted in Abuse, Coping, Dad, Death, Mom | Tagged , , , , , , , , | 8 Comments

Happily Hibernating, but Waiting for Spring

There are stories about people going crazy because of cabin fever. Mom and I have been snowed in for a few weeks now. OK, mom has. I live in fear of her falling because even though she’s stronger, she’s still a bit unsteady (in fact she fell today). I’ve had to trudge out to get groceries, but to be honest, I’m content to stay in. I don’t mind the snow. I’ve lived up here all of my life, but ice is unforgiving and I’m not great at walking on it, especially with a bum leg. I don’t fall very often, but since mom has been sick and now that she’s recovering, I’ve become especially mindful of keeping myself healthy for her sake. In other words, I’ve become paranoid about falling.

But don’t worry about us, we haven’t gone crazy and in fact, we’re warm, well-fed and content.

I think mom and I must have an ancestor who was a bear, because we’ve always been content to hibernate. We even used to play a game when I was a little girl, where we pretended to be momma bear and baby bear.

Mom still thinks she’s the momma bear, of course. But really, I think most moms are like that. Cancer did not remove that protective, overbearing (no pun intended, OK maybe just a little bit) aspect of her that both gets on my nerves and endears her to me.

I’ve kept myself busy doing my job (I work from home), taking care of things around the house and spending time with mom in the evenings. Some would find this boring and perhaps those are the types who get cabin fever, but as I’ve said, mom and I are related to bears.

But just wait until spring comes. We’re already planning how we’re going to go for walks. First, we’ll start with the driveway and then as mom continues to get stronger, we’ll graduate to walking up and down our streets, the mall and beyond.

OK, so maybe that’s not exciting to you, but for us, it’s big.

Recovery from chemo can be slow going, I guess. But in my experience, healing is always a slow going process. We take our steps, one at a time, through snow, ice, good weather and bad, until we are walking beyond the past into whatever the future brings.

Until then, we are snowed in.

(P.S. I know the photograph I used isn’t of hibernating bears. But a photo like that would probably be dangerous to take and it would only show sleeping bears. Mom and I aren’t sleeping. We’re both keeping busy. I however, am not riding her back anymore. Well, not unless she’s getting on my nerves.)

Our front lawn

Posted in breast cancer, Cancer, Caregiving, Coping, Mom | Tagged , , , , , , , | 10 Comments

Requiem

My cousin died this week. Ironically, she died on the anniversary of my mom’s double mastectomy. So on the day that mom and I were celebrating her life, my cousin was losing hers. Obviously, this is a sad occasion, but what makes it worse is that my cousin did not have to die. And it is because of this that I find myself feeling unable to mourn her loss.

You see my cousin was a drug addict. She had been offered all kinds of help for years and always obnoxiously refused it. The last time I saw her, she was in the hospital trying to get her druggie friends to smuggle marijuana brownies up to her. She was happy and smiling. It’s a nice memory, except for the drugs and the fact that doctors had told her if she didn’t change her way of life that she wouldn’t make it. But she there was smiling and happy, seemingly oblivious to the goblin knocking at her door. She balked at the doctors one and all, giving her usual three-finger salute to them in defiance.

But that was my cousin.

Years ago, she had a prestigious job making 70K. Then through a course of bad decisions and destructive relationships, her life just spiraled out of control.

Now she’s gone and I’m feeling kind of numb.

Perhaps it’s because I’m so emotionally exhausted from everything I’ve been through this past year that my emotional resources or drained. Or perhaps it’s because I no longer had a close relationship with my cousin having allowed it to drift away. Think of me what you will, but after growing up with a parent who had an alcohol and drug addiction problem; I felt completely unable to cope with her problems too. But I think it has more to do with the fact that for the past year I have watched people valiantly fight to keep living in the face of cancer.

After being exposed to that kind of strength and courage on a daily basis, it just feels impossible to have much sympathy for my cousin right now. True, drug addiction is a medical issue, but she had more resources than most and more chances than I can think of to help herself. She didn’t have to die, but for some reason she chose to.

I don’t know if she didn’t take the doctors seriously or she just didn’t care. Perhaps she was tired. I don’t know and there was no way of getting an answer out of her. She was so drug addled the last time I saw her that it was difficult to decipher much of what she was saying.

I hope this doesn’t sound like I’m judging her harshly, because I’m not. For some reason, she chose a tragic existence for herself that hastened her death. That’s horrible. I couldn’t save her, even though I wanted to. But there comes a point when you’re dealing with someone like this, that you realize that you can’t save them. They have to save themselves.

My dad was able to overcome his addictions and I was hoping the same for my cousin, but it wasn’t to be and it had nothing to do with fate, but with her own poor choices.

Just the same, I loved her, and yes, this is a loss, and not only to my family, but the community at large. You see, before drugs took over her life, my cousin was a social worker. I remember being amazed at the stories she’d tell of the people she’d helped. So, it’s ironic that she, not only became someone who needed help, but also someone who refused it. She had devoted her life to helping people in situations like hers and she did so much good. God only knows why even started taking drugs to begin with. She’d seen firsthand with so many of her clients how much drug addiction can destroy lives.

Maybe I’m a little angry at her. I don’t know.

I tell myself that I stopped missing her a long time ago, because the person she became was not the person I used to know and admire. But that’s a lie. Perhaps I’ve already mourned her and maybe that’s the reason why I’m feeling the way I do now or maybe this is another lie and I’m just stuffing my feelings for her deep down inside because this all hurts so much.

Even so, I loved her, even if right now, I feel too hurt or numb to even shed a tear.

Goodbye Gail.

Posted in Cancer, Coping, Death, Mom | Tagged , , , | 16 Comments

Happy Anniversary Mom, OK So I’m Two Days Late With This…

But I have my reasons for being late. For some reason it just felt important to spend the last two days being quiet with mom. Last year, at this time, mom and I were going through two of the toughest days of our lives. This year we sat around the house and vegged, which seems like a fitting way to celebrate this milestone.

Last year, on January 29th, mom had a double mastectomy. The weeks before that date were marked with fear and apprehension until finally the day we dreaded came. Mom didn’t want to let go of my hand as they took her down the hall to surgery. I didn’t want to let go of hers either, but I was trying to be strong and didn’t allow her to see my fear.

I wanted mom to be strong too and I knew if I got upset, then she would get upset too.

It was an endless day of waiting and trying to keep busy and cheerful with my aunt and friend Carol, who came through a snowstorm to sit with me. Other people in the surgical waiting room came and went, as we sat there and waited for the news that mom was OK to finally deliver us from our fear.

Unfortunately I was in the cafeteria when the surgeon came and I instantly knew it was bad, because he was there waiting for me when I returned. The surgery had been a success, but they’d found more cancer in lymph nodes. He had decided not to remove the other cancer at the same time, feeling that mom would recuperate more comfortably that way. We had no idea how long it would be until her next surgery or how quickly the cancer was progressing through her system.

Just the same, every reserve of strength that I had, vanished in that moment. I tried to speak, but nothing came out but sobs. Mom and I had thought/hoped that the mastectomy would be the beginning and end of our journey, but that was not to be. In that moment, I had no idea that we had months of surgery and cancer treatment in front of us. All I knew was that they’d found more cancer and that mom might possibly die, and that idea killed me.

My aunt also broke down, certain that my mom would do the same. I can tell you now that she never did, but in that moment, we had no idea what her reaction would be and it scared us even more. My aunt was also particularly upset that the surgeon had decided not to remove all of the cancer at once, but I told reminded her we had prayed for God to guide the hands of the surgeon and that we had to hope that he had answered that prayer. Now, one year later, I know that he did, but a year ago, all I had was faith.

But even with all the tears and fear, something beautiful happened. After they’d settled her into her hospital room, mom had the most beautiful look of love and relief on her face that I have ever seen. It both lifted my spirits. It also broke my heart, because I knew about the cancer. Even so, the expression on her face gave me hope.

The following day, it fell on me to tell her about the cancer. I had hoped that the surgeon would be there to help me, but it was a Saturday and he had floating rotations with the other surgeons on his team. I prayed as my aunt and I journeyed through the corridors of the hospital for the right words to say. Thankfully and miraculously, an elder from my place of worship had come to visit her. He helped me tell mom and she didn’t break down as my aunt had expected.

The rest of that weekend was filled with endless walks up and down hospital corridors, lack of sleep and monumental amounts of stress in the cramped hospital room mom shared with another patient. One of the nurses tried to give mom another patient’s toothbrush by mistake, and the surgeon never made an appearance until Monday to tell us that mom was doing better than expected.

He has redeemed himself since, but last year at this time, I was not happy with him at all. He discharged mom that day and that evening she was talking about making us all dinner. We didn’t let her, but the idea that she was feeling that lifted all of our spirits.

A few weeks after mom the mastectomy, she had her lymph nodes removed and thankfully, only a few of them had cancer cells. I can now understand why the surgeon held off on doing that surgery the same time as her mastectomy, because the pain afterwards was much, much worse. The rest of the journey you know. Then mom had chemotherapy, lost her husband of 51 years and radiation treatments for five and a half weeks after that.

It’s been a hell of a year, but mom continues to be my hero. Looking back, I don’t know how we made it. We took this journey one step at a time and we’re still on it.

By the way, mom is still cancer free and my anemia is fine. Mom and I are still on our cancer journey, but it’s definitely easier now than it was in the past. Sure mom has moments when chemo brain makes her seems spacey, but that’s to be expected. And I have moments where I have to remind myself not to be afraid, but we’re getting there, one step at a time.

So yeah, I didn’t write a blog post on the actual day. I hope you can understand why I made that choice. Mom and I needed to make her anniversary a regular, old boring day. I can’t think of a better way to celebrate it.

I love you mommy.

Happy Anniversary.

I took this photograph of mom the summer before she received her cancer diagnosis. She’s a bit thinner now, but that beautiful smile is still there.

Posted in breast cancer, Cancer, Mom | Tagged , , , , , , | 10 Comments