Help for Healing

Bitter & Sweet, living daily with grief


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Pit Bulls and Hockey Moms

I have a sign in my basement that says, “The only difference between a pit bull and a hockey mom is lipstick.” It reminds me of that NHL commercial that used to be on. Two men get on an elevator wearing rival team jerseys. The next time the door opens they both come out looking beaten up. The line is something like, “hockey fans are a different breed” or some similar sentiment.

I get it, but I have to admit I haven’t fully acclimated and I probably never will. Frankie got into his first real hockey fight last weekend and ended up suspended for three games. People of all ages and genders congratulated him for a defense man’s job well done. Even my counselor said that it was good that he was such a tough player. It’s needed in a sport like that.

I repeat, I get it. But I had a stomach ache driving home from that game. While I can mentally wrap around it, every time he checks hard or looks like he might scrap, I stand on the bench, frozen with my hand over my mouth. I will never get used to watching my son in those situations. I figure everyone else can high-five him, but I just can’t. I wouldn’t scold him, but I just can’t bring myself to cheer him on. I worry to death about him.

At another game this week, I was hanging out with a bunch of parents. Frankie had told me they were playing a team that hadn’t won all season. I felt bad for them before I even got there. I remember the year Frankie was on a team like that. It was torture to go to the games. This night, the opposing team was short players too which meant the kids on the ice were utterly exhausted. I kept watching the goalie and seeing his head hang low every time our team scored against him.

Finally, I couldn’t help myself and just blurted out how sad the goalie looked. The parents started to chuckle and one of them turned and said, “Spoken like a true counselor.” That did it. Everyone cracked up, even me. I really am the social work type without even thinking about it. The jokes just piled on after that. They suggested I go over to the glass and try to talk to the poor kid. Maybe I could offer him my card and a free session. I could say things about his self-worth. You get the gist of it. It was all in good fun and I had to laugh with them and even played along with it.

Yep, I’m not a true hockey mom. I just don’t have enough pit bull instinct.

Actually, I have to admit, I’m more than okay with that. In fact, I hope that part of me never changes. (But let’s not tell Frankie!)


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Guest Blogger: Marcy Westerling

I came across an article by Marcy Westerling and looked her up. Her blog is at livinglydying.com. Here is the description on her blog:

“Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.” You should check her out!

She has graciously given permission to repost her latest blog so I hope you find it helpful. It is entitled “I hear you are doing Great!” and was posted on September 13, 2014. It reminds me of a passage I wrote in my new book about figuring how to answer people when they ask, “How are you?” Thank you Marcy!

“Recently a friend noted how difficult it was “to know how you are doing.” It’s true, I suppose. I have used the Livingly Dying blog this summer to report on the macro challenges of trying to access the care that I think is best suited for my current situation rather than bore folks with the blow by blow of this summer’s treatment.

In the jumble of the last 4-½ years of living on treatment it is unproductive to rank the various moments. But this summer’s treatment ranks up there as hard – between the frequency, toxicity, length and travel I have been living a half life as one full week (plus) goes into treatment and recovery. My exhaustion confuses me. Am I tired, how tired or have I slipped into depression? All of the above may be most likely.

This week I have accomplished tasks as cooler temperatures invited activity. It thrilled me. By Wednesday night I was violently ill – did I do too much, random luck or am I cursed?

I just don’t know how I am.

The other week I ran into an acquaintance as I arrived at the memorial of a friend. She bellowed from across the street, warm smile on her face, “I hear you are doing great!” And I wondered in what possible context she was using such an adjective to describe my reduced life of constant nausea and limitations. Was I supposed to nod in agreement? (I am doing great compared to a chemo patient in Gaza or Syria.) Instead, I declined her bear hug, saying my blood counts required vigorous avoidance of germs that day, my nadir. She asserted that she felt great. “Yeah”, I said, “but it’s not about you.” I felt like the grumpy curmudgeon I am.

This summer I have had minimal social contact – these slight encounters leave me bruised and even more confused on how I am. Alone, I am content.

It has been a summer of loss. I lost the cancer vacation I’d so hoped for after completing the phase one clinical trial cross county. Instead my cancer went nuts. My June to do list, gleefully assembled in May when I was “healthy” for 45 days, was pretty damn vibrant. I was excited! This summer I have lost so many trusted comrades as they close out their cancer journeys. Some have been in active choice; other’s reluctant, as they died one by one. I have done more soul searching on when and how I will cease treatment. Not yet but the time inches uncomfortably close. I no longer know my next steps. I now understand that a body can only tolerate so many years living on chemo without breaks. It’s not just about containing my cancer; it’s about keeping the rest of my body functional.

So, how am I as I close out the summer of 2014? Depleted, ever hopeful and ever realistic. Please accept that reality and don’t call me a cancer “thriver” or “survivor” or tell me I am doing “great”! This summer I identify only as a cancer veteran crawling around far too much. And yet very, very glad to be alive.”


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Anger, Chapter Two

I had a few days like my old self. I recognized it when I was running errands and being pleasant to people in line, to people behind the counter, etc.. It really isn’t hard to be nice and people really appreciate it. Seeing their smiles is worth the small effort you put in.

But then, the new, angry me came back with a vengeance.

My friend was driving in the Home Depot parking lot and accidentally pulled out in front of someone. We made all the usual “I’m sorry” gestures to apologize because my friend realized it was her fault and felt very badly about it. I had to get out of the car at that point and walk by this guy’s car. He had the window open. So I went the extra mile and apologized again to him for almost causing a fender bender. He said it was okay, smiled at me, and I knew it was worth the effort.

Wrong.

He started yelling at me. He went on about how we lacked basic driving skills like “pay attention to the road” and “look where you are going.” He was nasty. Old me would have shook my head and thought about how sad it is that people let things like that ruin their day. Everyone makes mistakes and most people don’t make them on purpose. But the new me snapped and screamed back at him. “We just F*****G apologized to you. What the hell is wrong with you?” He basically told me to shut-up and drove away. I was furious. There was another lady that witnessed all of it and she had a few choice names for the guy, too. But I was so mad I was shaking. And I didn’t stop shaking for about an hour. What is the world coming to when you can’t even offer a sincere apology and have it mean anything?

This week, I had some new grief anger, too. Out of the blue, I had started to cry. I looked at this beautiful 8 x 10 glass frame I have had for years. It holds the picture of our last Father’s Day together in 2010. It is the photo that ended up on the back of the cover of Bitter and Sweet. It is Tim and I and the four kids. I wanted to pick it up over my head and smash it into a million pieces on the floor. I was shocked by this. I have never felt that or ever had urges to be destructive.

And I didn’t even know why.

I didn’t do it, but it got me thinking. I’m mad that Tim left us, that he left me a widow. I look at the four kids and think about how well they have all done. They grieve and are sad sometimes, but they have all done an excellent job in their own ways with their own personalities, in moving on. They seem well-adjusted. I am so grateful for that. Thank God.

But what about me?

I remember when Frankie was a newborn, the first couple of weeks I was in a daze of exhaustion and complete chaos internally. I remember distinctly staring at my computer screen and saying, “What is wrong with you? You have a Master’s Degree. You own a business. You can figure this out.” And I did. And it didn’t take me long to get my bearings.

It’s the same feeling I have now. I know I’m smart. I know I’m strong. So why can’t I figure this out? I don’t feel like I’ve adjusted. And it’s going on four years now.

I’ve been talking to my F-bomb friend a lot lately. I told him he’s the local anger expert so I keep asking him to help me understand what’s going on inside me, and what I’m supposed to do with it. He asked me if I’m angry that I’m a widow? Or just angry that I’m alone? I thought it was an excellent question. I decided it’s both.

If I were divorced, there would be another parent out there that would still be responsible. If I were divorced, I could sit around and blame myself (or him) for failing at the marriage. But this? No one to blame but cancer. I was a good wife, a good mom, and a good step-parent when the kids made life hell for me. So why?

I’m just mad. Mad, mad, mad. I told my girlfriend I might go postal someday. She said, “Please just don’t shoot me, ok?” I told her she better not piss me off then. We both laughed.

BUT…

Just so you don’t completely give up on me or think I’ve lost my marbles entirely, I will give you a classic Darcy story.

The boys got me flip-flops for Mother’s Day. I wear them constantly. I went to get some groceries this week, and as I was walking out of the store, my ankle twisted and I was forced to step out of my flip-flop. What the heck? Somehow- and I have no idea how this is even possible- my flip-flop got wrapped around the wheel of the shopping cart. I mean totally wrapped. It took me several minutes to figure out how to remove the thing. Once I finally figured it out, it was so warped I had to throw it out when I got home. But just picture me squatting in the grocery store, wrestling with my shoe in a wheel, and you should end this blog with a chuckle. 🙂


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A Day in My Life…

On Monday, I noticed an odd spot on my breast. Looked like a bruise, but then not quite. I went to my friend’s house who is a breast cancer survivor and asked if I could show her. (I can’t imagine men being comfortable showing each other a concern- ha ha!) She thought it was strange but was more concerned whether there was a lump. We were both unhappy to discover there was a very distinct lump. She told me a few reasons why it probably wasn’t anything serious, but I definitely should call the doctor in the morning. The rest of the day it was in the back of my mind (of course), but I managed to keep it at bay knowing it was probably not serious.

Tuesday morning, I called the doctor first thing. They fit me in early afternoon. I had my usual full day ahead of me so the first couple of hours I just pushed along. Then I went in the hot tub to try to relax a bit before my clients started coming. I started to get that panicky feeling and my breathing was getting choppy. I talked to dear Summer, knowing she would give me a rational smack in the head and I would be fine. Instead, the flood gates opened. I was scared. Really, really scared. She offered to go to the appointment with me. In between sobs, I told her that wasn’t necessary and I knew she was as busy as I was. But of course she came and of course I needed her.

I had to pull it together to keep working until my appointment, but between clients I was bombarded with thoughts and fears. To be fair, they really weren’t irrational. I know better than most that a simple, small thing can alter your life forever. My first thought was Frankie. This just couldn’t possibly be anything because that 11-year-old kid couldn’t possibly be asked to have no parents at all. Even if I could be treated and beat it, that poor boy does not need to endure watching the process all over again. Treatments, vomiting, schedules being thrown out the window. Watching someone visibly change who is supposed to be your tower of strength. He just can’t be asked to do that again, right?

Then I started thinking about my life in the last couple of weeks. I have been re-evaluating my life very intently because I have been working too hard. I have been burning the candle at both ends. I have been exhausted at the end of every night and know I can’t keep it up. I have been trying to make changes, but have struggled with what changes to even make. And then I really panicked. Holy shit! What if the universe/God has been on my case about it because I need to make room for treatment? Is that what this has really been about? Summer and I were just talking this weekend about how with all the interactions we have with people, if we ever got cancer, we wouldn’t go to Roswell (our local cancer hospital). That would mean regular trips to PA or Ohio. Overwhelming thought. Breathing is getting tough again.

I take a shower before I go to the doctor. While I am in there, another related thought crosses my mind. I absolutely know what it takes to fight cancer. I know the stamina you need. I know that a positive attitude is mandatory for success. I know that I have to muster up the strength that I know I possess and I will have to figure out how to access it. And then I found myself sitting in the shower seat sobbing, just like the day I found Tim in there when his daughter came to surprise him for Father’s Day. Because I knew that I just couldn’t do it. I’m too depleted. I will end up dying because I’m not the woman I was before taking care of my terminal husband. Even though it has been three years, I’ve not recovered.

I know my friends will shore me up. I know it. But Christ, Frankie won’t even have a step-father who loves him after I’m gone. Tim’s kids had me and I don’t love them any less since he has been gone. I know that Tim had peace about that. I failed Frankie in that respect. Utterly failed.

Brigette was home with a sick child, but she kept in touch with texts. She told me she didn’t remember the last time she prayed as hard as she was praying for me.

We arrived at the doc’s. I love Dr. Grace. Tell her everything, trust her implicitly. She looks at my mark and looks puzzled. She hasn’t ever really seen anything like it before. (Why does that always happen to me? I’m always like a freak show for doctors!) BUT… she knows it definitely does NOT look like cancer. I love her because I never have to explain anything to her because she remembers every detail of my life. She thanks me for not waiting and says she is grateful she can trust that I won’t mess around with anything medically. And without being told, she knows it is because I can’t possibly take risks because Frankie needs me. She is glad I get that all on my own and she doesn’t have to pound it into my head. Even though I feel better after seeing her, she promises me by the end of business day I will have answers. She works her magic and I am able to leave her office and go directly to the radiology center.

Off we go. First the mammogram. You know the drill, ladies. First set of pictures and then you sit in the waiting room. As suspected, I get called back for more. Now they see something in the other breast they are also concerned about. Great. She has to smoosh them further for the second set. Then they ask you to hold your breath while they take the image. I try until I finally gasp because the pain is too much. She tells me ever so nicely that she hopes she doesn’t have to retake them because I yelled out.

I go back in the waiting room and tell Summer I can’t believe with all our modern medicine we haven’t figured out anything better than putting our delicate breasts into a vice grip. She laughs and tells me if men had boobs, there would have been an answer years ago. I laugh at that. (Yes, Gary, I admit that is a sexist comment, but cut me some slack!)

Next the sonogram. She tells me she thinks it is a cyst. Doesn’t know why or how it would get there, but possibly it was pinched somehow. Phew.

I tell my step-son Colin about my day. He just looks at me. I told him that I didn’t think our family could go through it again. I told him I didn’t think we would be able to pull off the great job we did with his dad this time. He just nodded his head.

Later, my doc’s office calls and say they agree it’s a cyst. They want me to put the hottest compresses I can stand on it, as many times a day as I can manage it. (Apparently they don’t know I am already burning the candle at both ends and don’t even make time to eat half the time!) If it doesn’t go away in a month, then I have to see a surgeon. Bottom line is, it may not be cancer, but it is still not right and not supposed to be there.

So I spent the night rejoicing. I spent the rest of the night being super grateful that I don’t have cancer.

Wrong.

I spent the night continuing to have a hard time breathing. Being the lucky woman I am, (no, that is NOT sarcasm) male and female friends called to check on me or just to say hello (because they didn’t know what was going on). And every time I said hello, I would burst into tears again. I wanted to be happy, but I felt like a wrung out dish rag.

Everyone got it. No one judged me. They all told me that my fear was perfectly logical, understand, reasonable, not irrational. My daughter Emily called me about 10 PM and we talked til after midnight. She told me that if I ever got diagnosed, she would move up here and help take care of me. She said she didn’t do that for her dad but she would do it this time. I read between the lines and thought she must have regrets about that with her dad. I made a mental note to talk to her in the near future because I don’t want her to be plagued with that.

I watched a movie recently. The girl looked at the guy and said something like, “You weren’t there when I needed you. In the end, that’s all relationships are. It’s being there for the big stuff.” I thought it was an excellent summation. I’m lucky enough to have people who ARE there. Summer left work to go with me because she got it. Anyone who happened to know I was worried about a lump would have done what they could to support me because they get it. If you lived through Tim’s cancer with us, or if you read the book afterward, you get it. If you love me, if you know how to feel compassion, you are there by my side.

Today is a new day. Now I am starting to feel that relief I thought I would feel last night. Today I am breathing easier and emotionally feel the gratefulness I understood intellectually yesterday. Again, thanks to my amazing support system. You know who you are. And for those of you who are reading and wondering why I didn’t tell you, don’t. It all happened fast so don’t be mad at me :).

I wonder what today will bring?


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Women and Sports

I am pretty sensitive to any hint of sexism, especially if it makes us women appear weak in any way. I know plenty of women who are athletic and knowledgeable about sports- by either playing themselves or with watching.

Me? I fall into the stereotype. I am not athletic. In fact, I am rather clumsy and accident prone at times. I try very hard to understand the basics about sports so I can interact with other people. But lots of times I just can’t wrap my mind around it.

Last night, I was at a speaking engagement out in the country. I got talking with a woman a little older than me and I ended up having one of those embarrassing laughs. When I really laugh hard, I cackle. It’s loud and goofy and it embarrasses Frankie to no end. But I just couldn’t help it.

Somehow the conversation had turned to sports and I was lamenting my ignorance. She told me she could probably top any story I had. She is an EMT by profession. She had gotten assigned to some sporting group, a football team to be exact. She saw the group of men in a circle with their heads down and ran into the field. Her husband (also an EMT) ran after her to stop her. He couldn’t figure out what she was doing.

She explained to him that obviously someone had been injured badly and she was trying to get to him as quickly as possible. He probably had to tackle her to stop her, which is pretty ironic considering it was a football game. He explained to her that it was a “HUDDLE” and what that meant exactly. I laughed my butt off when she told me. That is such a Darcy move if I ever heard of one.

Like in high school when I attempted to play basketball and shot at the wrong basket. The saving grace was that I sucked (of course) so I missed the basket.

Or the first time I went to a professional hockey game. I was living in Chicago at the time and my roommate took me to a Blackhawk’s game. Now she happened to be very athletic and sports-gifted, unlike me. We were sitting there with thousands and thousands of people and a fight broke out. At a hockey game? Really? It was my first one so I had no idea that fighting was pretty standard. So all those people were going crazy and cheering the fight on. I was mortified. I thought I was witnessing humanity at its very worst. I started crying. Yes, I actually started crying. I thought it was violent and cruel. My roommate laughed so hard at me I thought she was going to pee her pants.

See how much I’ve evolved? I can go to a Sabres game and relish the fight like everyone else. I get caught up in it like everyone else. And I’ve learned the rules. Last fight I saw, our guy got the crap kicked out of him. But at the last moment, he was on top and pulled the other guy down to the ice. Everyone went wild. So I learned that you can lose badly, but the only thing that matters is the last five seconds. Everyone forgets what happens before that.

I even went to a game recently with someone who does not like the Sabres. I endured his pot shots as the Sabres lost, like they do ever so often unfortunately. I threatened to beat him up, but he’s a prison guard so I thought better of it. I may have evolved, but I’m not stupid!

Never in a million years would I have dreamed that I would consider that growth. What has happened to my bleeding heart? But hey, I do know what a football huddle is so I guess I’m not completely hopeless :)!


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Not Meant To Be

Some things just aren’t meant to be.

Last night, we hoped to go see the fireworks in East Aurora. They have the best ones I’ve seen around here by far. Of course, the weather has been on, off, on, off so we didn’t know if they would happen. I called the police station and they said they were still on at 10:00 PM. Then it would rain a little, so I would call back. Same answer. Nice guy that kept answering.

I started having other people call on their cells because I felt stupid calling again. We decide to go and at 9:00 PM it starts pouring. Pouring. We decide to play some cards and see if it clears up. At 9:20 PM we call and yep, fireworks at 10:00 PM. We got there about 9:35 PM and people were leaving and coming all at the same time. I call the police one more time and he says politely, “They are doing them right now.” Sure enough, we could hear them. They started them early!

By the time we parked the car and started to walk, we picked the only street with no crossroads and walked entirely around the park. When we finally hit a visible spot, we literally saw the finale. Ok, we heard the finally. They were the loudest fireworks I’ve ever heard. (Or maybe I’m just getting old?) We had to laugh because we just weren’t meant to see them, no matter how great they were. We had a nice, long walk in the drizzling rain though 🙂

Still good to be with friends. We were going to come back and sit in the hot tub but it was lightning by then so everyone went home or to sleep instead.

I worry about whether keeping my house is just “not meant to be” sometimes. It was a bad week for that topic. I got an electric bill that showed my budget rate went up over $80/month. Surely that was a mistake. I called. Nope, our “consumption” has almost doubled in the last couple of years. “Ma’am, did something change in your house two years ago?” Yep, something huge changed two years ago. My husband died. Wouldn’t you think the bill would go down with one less adult consuming electricity? That didn’t make sense. I told the guy maybe my husband went around the house yelling at everyone to turn the lights off…

The salt generator on my pool bit the dust last week. After about 10 or 12 phone calls, I finally found the only place in western New York that services them. Half hour drive, miscommunication, rude sales people. It’s an almost $400 repair. Tomorrow’s to-do list includes fighting with the company to cover it by warranty. It’s a $2000 part and I missed the warranty by a week. So far they are refusing to cover it. Ain’t that a pisser.

The camper is being picked up next week. My dad is frantically trying to make sure everything works so we spent the day bickering yesterday. In between all the other chaos, he wanted me to find information, locate the missing electric piece, and fill the propane tank (for someone else that is buying the camper), all of which I didn’t want to deal with. I didn’t have time to, and frankly didn’t think we needed to go beyond the call of duty knowing I sold the camper at a low price and the agreement was made it would be taken “as is.”

While all that is going on, I am cleaning out the hot tub. I have to drain it, then clean the sides. We broke our new hose a couple of days ago so the old one is back on. In the middle of it, the old hose splits and water is squirting everywhere. Have to figure this one out fast because I have to work soon. Gotta earn money to pay for camper parts, pool repairs, and new hoses.

It’s very circus-like here some days and at those times I usually think I just need to sell my dream house and get a tiny little place for Frankie and I. Today though, I can almost laugh at the comedy of errors the last few days. Almost, but not quite. Happy Birthday, America. I’m gonna celebrate by taking a quiet nap 🙂


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Fourth of July

So this is something that I am not sure I should go back and add to the book or not. My dilemma is, that it was a significant event in our lives. Yet I don’t want to anger anyone by including it either. Any opinions?

July 4, 2010

The last holiday we celebrated was Father’s Day and boy, it would be impossible to beat that. Holidays are already loaded most of the time, but now there is even more added pressure. What if this is the last (fill in the blank) that Tim has where he is feeling well? That was the inspiration behind flying Emily here for Father’s Day. Now it is the 4th of July.

We decided to go to spend the day with one of Tim’s family members at their cottage. It’s a lovely place about a mile from the lake. We usually walk down to the beach to watch the fireworks because there is little or no parking there. Tim and I discussed it at length and decided that in spite of the annoyance, we should not walk the mile there and back. His strength comes and goes and is often unpredictable. We knew his family would not want to drive, so we made our pact before we got there.

The weather was lovely. Things were great until it was time to go to the beach. Tim caved to the pressure to walk rather than drive. I got the clear impression that my concern was not welcomed by Tim’s family. It was like I was once again just trying to boss Tim around. It ticked me off because they had spent comparatively little time with us and didn’t understand Tim’s physical limitations. Of course, Tim wanted to save face with everyone and not admit that his abilities were compromised. Things were extremely tense between Tim and I. I went to the lakeside so Frankie could swim and just cried while I stood there alone. What if we don’t ever get a do-over? What if we have spent our last 4th of July together fighting?

On the way home, one of Tim’s family had too much to drink and was fighting with his wife and daughter. By the time the mile walk home was completed, there were a couple of people crying. We tried to interrupt the fighting to say goodbye but we couldn’t even break in. We got in the car and Frankie asked what the heck was going on? Tim fumbled an answer about how sometimes people get upset and don’t behave very well.

We ended up spending an entire counseling session processing this event. Tim and Scott concluded that Tim kind of gets out of sorts sometimes when he’s around his family. The fighting brings back tough memories and also reminds him of where his own temper can take him if he doesn’t work hard at controlling it. We were sad, but are hoping that we get a chance next year to have a more positive and happy 4th of July celebration together. Maybe we can even rival Father’s Day!