Saturday, January 24, 2009

The ugly remnants of Cancer…

They are everywhere. The little reminders of Cancer. How it changed our life. How it slowly killed his body. The beast itself is now gone, at least in David’s body, but the price we paid was high. We could never quite beat it down, and in the end the only thing that silenced it was when it finally silenced David. Irrevocably. And now I have all of these damn signposts of our battle with the infernal disease.

The shower curtain rod that curves outward, creating more room in the tub, which made bathing David easier after the stroke. The blasted ramp that juts off my porch. The ramp itself was impeccably done...a couple guys from work just showed up one day and built it. It is the nicest damn ramp I have ever seen...looks better than my porch that is in serious need of replacement. And yet, it is ugly. It may be a nice wood walkway to some. But to me it is a reminder of what the Cancer did to David. Of how he lost his mobility after the stroke, and then as he finally began to recover from the stroke, how that tumor came back and took away his freedom once again. And as that insidious mass began to grow and press on his brain, David’s strength and motor skills on his left side started to wane once again. And how in the end he was stuck in the wheel chair that he hated so much.

Then there is the cane. God how he hated that thing. And as he became more and more dependant on it, Alec became more fascinated with it. He was three and a he was mimicking david. He used to walk around the house with it. It made David insane. And I remember one day, after Alec was in bed, david shaking that cane and saying he wanted that cane gone when he was. He did not want it lying about reminding Alec of him like this. He wanted Alec to remember him in his vitality. The playful, attentive dad that used to pick him up and throw to the couch and than tickle him unmercifully. He did not want to be remembered like that. What he called, "A shell of his former self."

There are so many things. All sitting around the house. Hidden in the basement or the garage. Leering at me. The bathing bench. The commode. The cane. The gait belts. Oh, and I must not forget the wheelchair. Not his nice comfy one he had near the end. The insurance company felt that since his tumor was terminal, there was no need to purchase it, so we just rented the cushy one. At the time I was horrified. Basically they were saying no need to purchase it, when we could just rent the damn thing monthly until David was either completely bedridden or dead. And yet, in reality, it was probably a good thing. What use do I have for a wheelchair specially configured for David? What would I do with it? It would have just sat around rotting like everything else. So mercifully, that is gone. But his transport chair is still here. The one we had to buy before they realized that even when and if he did recover from the stroke, the bloody tumor was going to do its business and inevitably take way his strength again...and that he should have something more comfortable and easier to maneuver. Mind you, David was a powerhouse and his use of the wheelchair was confined to the end. He was mobile for much longer than they anticipated and defied what statistically and medically his body should have been doing. But he could not bypass it completely and we did end up using it in the final months.

So, all of the crap just sits here. I plan to donate them. The equipment that is littering the dark corners of our basement still have a purpose and can help others. I know how insane medical bills can be and if someone is in need of this equipment, than odds are they have all sorts of other medical bills as well. I am looking into a donation program that specifically benefits patients in need. Although I would love to just go out there and beat the shit out of the wheelchair with a baseball bat, it would not be productive. It might make me feel better for a brief moment, but I know that the equipment can serve its purpose so much better by helping someone else in need with disabilities. And although transitory as it might be, beating the crap out of the equipment would not have any long satisfactory effects.

Sunday, January 18, 2009

Running on fumes...

The last few days were interesting, to put it mildly. This stomach flu took my ass down. Not surprising considering I have been running on fumes for months. Actually probably much longer than that. I have been running for two and a half years now. I find it ironic that I could manage all of David’s medications, his care, raising our son and all the other crazy stuff that goes with life. And yet, taking care of myself always ended up on the bottom of my list.

Lately I thought I was doing so much better. I made sure I was getting a reasonable amount of sleep. Eating healthy. Began doing meditation once again. But despite all that, I think my body just had too much. Too much of everything. Loosing David was the final straw. Grief is taxing on the body. During the 10-week grief workshop I attended, I learned that loosing a spouse is one of the single most traumatic events a body can experience. No shit!? Really?

No, it is not as bad as having the beast itself I am certain. But non-the-less, bereavement takes its toll on anyone who has lost someone they love. I have been on empty far too long and my body is now beginning to show physically what has been going on internally for the last couple years. I rarely got sick after David was diagnosed. Somehow I knew I could not, so for the most part I didn't. And now that he is gone I have gotten a cold every few weeks. And now the flu. Absolutely Lovely...

Friday I was sick most of the night and Saturday morning I realized it was going to be quite difficult to care for the little guy, seeing as much of my morning was spent in the bathroom. So I called my In-Laws and they thankfully took Alec for the day and the night. I hated to have him go. Although I was laughing and making jokes about my gurgly stomach, you could tell that he was still disconcerted. Mommy was sick. He was not terrified, which is an improvement over 5-months ago. Just a little off kilter. But he went over there and when I checked in periodically, he was having a delightfully fun afternoon. The day was quiet and the night even more so. It was the first night Alec has not been here since David died. I can not put into words how quiet and lonely that night was. And how painfully aware I was of David’s absence and the void he has left in my life…

Something good did come out of this whole messy experience. I napped. Boy did I nap. I slept three hours Friday and took a two hour nap Saturday. I have not napped for that long in years…not since some time before that crappy day back in June 2006. And obviously my body needed it. I had brief moments of guilt. How could I sleep that long? There is always so much to do. But in reality, I knew none of that mattered. The paperwork. The bills. All the life crap will continue to be there. It is not going anywhere unfortunately, but I realized that I needed to set all of that aside and just let my body rest. Recover. Heal. And I did. I let my body try to mend and spent the day being sick and doing absolutely nothing productive. How insanely remarkable!

I think I will need to do more of this in the coming months. Not being sick. But taking little moments to take care of myself. I tend to run around like a banshee once I put Alec down for the night. Bills. Paperwork. House. All that life stuff I used to share with David, but now must be taken care of by me. Recently I began going to bed a little earlier to read and unwind a bit. I think that is a good start, but I think that I need to take a bit more time now. Not nightly, that would be impossible. But maybe even once a week or even once every two weeks. Just 3 hours for myself after Alec goes to sleep for the night. Maybe read more. Maybe watch some Doctor Who. Maybe even begin making art again someday. But I need to do something I enjoy. I cannot keep going at this pace. If I want to continue to be healthy and care for Alec, I need to start taking better care of myself...long term. And as I have been told by more than a few people, I cannot be wonder woman all the time...although I would like to be. Some days I just need to be Skye.

Friday, January 16, 2009


Last night I came down with something. Who knows if it was a 24-flu thing or what. Nothing tragic but I was sick most of the night. And I realized at some point around 2 am…how very alone I was. I am the sole parent now. There is no one to pick up the slack while I am sick. When Alec woke up, no matter how I was feeling, I was going to have to get up and take care of him. I also worried, what happens if he wakes up at some point during the night? He rarely does, but it happens periodically. And then what the hell was I going to do? I was in no state to walk upstairs let alone be able to take care of him if he needed me. Ah, welcome to single parenthood. I know this is not a singular event. Single parents go through this all the time. It was just the first time I was faced with this particular scenario on my own.

The night was a long one. I felt so fragile and alone. Curled up in a ball on the couch. Oh, and that brought back difficult memories as well. I had not slept there since back in July, when David became too weak to take the stairs and I made a cozy little space for him in our studio downstairs. Things had progressed rather suddenly and I had not gotten a second bed for downstairs yet, so I slept on the couch so I could be close to him and attend to anything he needed in the night.

So last night was difficult on many levels. And yet, I was so sick they were just transitory thoughts…flitting through my head. But I did not think about it for long. I felt too crappy and it was too much. So I just shut it off and prayed that when Alec woke up in the morning I would be through the worst of it and be able to take care of him. Alec gets very unsettled if anyone is sick that he cares about. And if you really look like shit, it scares him. The leap in his little mind from sick to having Cancer is a short one. It is understandable and he has gotten progressively less twitchy about it as the months go on, which is good.

But he slept deep and sound. Totally oblivious that I had been up all night. And I was able to get up with him and get him ready and dropped off at Grandma and Grandpa’s before I got sick again.

I thought the night was quiet. Today was worse. I did not have the static or soothing sound of Alec's breathing on the monitor to comfort me. There was just me. The silence was maddening and a brutal reminder that no one was here to take care of me. To make me a pot of tea. To wrap me in a blanket or just sit near me...

I love the person I have become. That I am more indepedant and know I can conquer anything I put my mind to. And yet days like these, when I feel sick and alone, what I would not give to have someone make me a cup of tea. Or brush the hair out of my face. Or just say they loved me…even though I looked like total shit. It is the little things. But the things I miss...

Saturday, January 10, 2009


Recently I had a doctor’s appointment. Nothing exciting, just your run of the mill stuff. It was shortly after I had been in for the whole lump debacle. It was a different doctor with different nurses, but within the same office.

As I walked in, I felt all those old emotions returning. Not quite as strong as before. But still there. The memories of David. The concerns. The sadness. I was feeling quiet and a bit lost. As I was taken back to the exam room, the nurse who was obviously having a bad day began a constant stream of complaints. She was whining about how awful her day was going. How no one was doing their jobs correctly. She is left to fix everything and it was just such a burden for her. Someone kept moving her clip board and other such nonsense that I can not recall anymore. But it was inconsequential. The world was not ending. She did not have cancer. She was just pissy because she was having what she considered a bad day. I would love to have had a day like that. It sounded like a delightful day compared to the hell I have been through and continue to be in. But that is irrelevant really. And who knows what other shit she may be surviving on her own path in life.

But what got me was this. We went into the office. She sat down and began checking over my chart. Confirming there had been no changes. Understandable. No biggie. As she continued to check my chart, her litany of complaints about her day and co-workers continued. Whatever…

And then she got to it. She asked me if I was still currently on birth control. I said no. Then she asked, “Well, are you sexually active?” Again I answered no. No details. Just no. You would think at this point she would have updated the god damn chart and continued on with the appointment. Because odds are, if a 35 year old woman comes into your office and she is now no longer on birth control or sexually active… odds are she is not happy about it …and odds are there is a pretty big damn reason. Maybe it is due to breakup. Divorce. Some form of abuse. Or in my case death. But there is a reason. But she was not thinking about me or why this change might have possibly occurred. She just decided to make a point and in a very accusatory tone said, “Well, your chart says here that LAST week you were still on birth control and LAST week you were still sexually active.” I said, “Well…I was not.” That should have been the end of it. But she would not let it go. She had to make a point that obviously other staff members were not doing their jobs and my chart was living proof of that. So, now she was left with the burden of it. And then she asked me again…as she said “To confirm, so that it is updated properly.” Confirm my ass. She was just trying to hammer in her point. Like I cared that someone else was not doing their job. And honestly, I know the nurse who had updated my chart the previous week and she knew my situation. She knew my pain. And she was extremely kind. She gave me hugs and cried with me. And amongst reminiscing about David, she ended up not revising my chart. Not a tragedy. But this woman knew nothing.

But even if she had not…she should have realized this was a situation I was not happy about. By my actions alone. Let alone if she stopped her diatribe to look at me. I must have looked mortified at that point. But she continued on blindly and when she asked me the second time to confirm it…that was it. My anger at her complete lack of compassion boiled over and with my last ounce of strength I sat up straight in the chair. Looked her squarely in the eyes and said, “No…I am no longer on birth control. And NO, seeing as my husband just died. I am not sexually active.”

Well, that shut her up. Finally. And a look of horror crossed her face as she tilted her head and recounted the last five minutes of our conversation. And yet, even though she seemed to have realized what an ass she had been, she did not apologize. She stood up, said gruffly the doctor would be in shortly and stomped out of the room. But I think I made my point.

My resolve shattered and by the time the doctor came in I was sobbing. But I did it, I kept my shit together long enough to make my point and make her re-evaluate her own actions. And hopefully next time she is having a bad day, she will not take it out on the patient. And maybe next time she will take a moment to step back from her own life and take into consideration the person sitting before her. Maybe not. It will be her choice…