November 2006 my sister Laurie called me from the States (I was living in India at the time) to tell me she had a lump in her breast and she was scared. Because cystic fibrosis is common in our family and we have no history of cancer, I more or less laughed it off, telling her not to worry. The following week she called me back to tell me she had breast cancer. Talk about being shocked, I was totally floored and speechless. Feelings of guilt, mixed with confusion, flooded my soul. I even briefly entertained the idea that maybe she misundestood. This couldn't be happening to my little sister (she's 14 years younger than me).
The next 3 /12 years we were on a roller coaster together. I came home from India for every major event. First she had agressive chemo. I was there for the worst of it. Then she had a hysterectomy and double mastectomy. Another form of breast cancer occurred. She underwent radiation and another round of chemo. Her husband decided he couldn't handle any of this, had an affair and moved to another state for 6 months. When his money ran out, he came back, feining sorrow and shame. Then the cancer spread to her lungs. She had surgery to remove two small sections from two lobes of her lung. Then she had a seizure and we learned her cancer had spread to her brain. Our family arranged a MAKE A WISH trip for her, her husband and two kids. Sadly she learned her husband was involved in another affair while on this trip, taking her into a deep depression. She asked him to leave after that and later they became divorced. I decided to return to the States to help care for her and the kids. Then her cancer spreads to her right kidney and it's removed. Then we learn, the cancer is in the muscle of her leg and they treat that with radiation. Also the brain tumors seem a little more active and she has a tiny cancerous cyst on her remaining kidney. She wants to keep fighting and is taking strong meds.
I'm trying to get a job to help support her. My elderly parents try keeping Laurie days while I'm at work, but they no longer have the stamina to provide this level of care. She really doesn't need to be by herself, but she thinks she can manage. Our whole family is deeply concerned and afraid for her. I'm pulling my hair out, cuz she won't let us hire help. This makes more work and stress on us all.
Where do I go for help for myself? Who is out there for the caregiver? When I need an ear, who will hear? Who will listen? Who will really understand? And can anyone help by interveneing and talking with my sister? Our oncologist is great. She seems to understand and supports us all. But in the end, the decision is still my sister's for as long as she is able to make decisions.
I understand this is one piece of herself she's fighting to hang onto: the ability to make decisions. I don't blame her. I'd be the same way - probably worse. But it's still tough. And we're all so exhausted.
There are days, and times , like this very moment, when I don't really want to be here. But I do care deeply for my sister. I would never walk away or desert her. I just get so frustrated sometimes. Like tonight. She's started sleeping on the couch in the living room. We have a small house and it's so inconvenient for her to do this. She needs to sleep in her own room, so we can use the living room while she's resting. I feel like screaming "can't you see how selfish you are being?" But her disease has escalated to the point that she really doesn't see the effect on those around her. She is completely self-absorbed these days. On some levels it's understandable. Can I confront her about this? Is that okay? Or should I let it alone? I don't really know. She's had so much pain in her life and so many deep disappointments that I want to give her whatever brings her a little joy. So if sleeping on the couch is part it, well I give in. But it still frustrates me and I don't like the feelings I have. It's not resentment, not yet. But I can see it going that way if I don't get some help for myself.
Cancer is expensive too. Laurie's broke. I'm broke, having exhausted my own savings to help her. My parents are broke too. The tenacles of cancer reach outside the body of the patient like kudzoo, a vine which entangles and slowly kills everything it clings to. Sometimes I feel like Laurie's cancer does that in some ways to each member of our family. It's slow and we hardly realize how it's hurting us until we ourselves start to become sick.
Well, I'm rambling. I have no one to talk to. I thought I'd just start a blog. I don't even know if anyone will ever see this. But if so, I hope they will know they are not alone. I feel alone. But I know there are scores of caregivers going through the same thing. We just don't really have a place to gather to talk. The caregiving itself sucks away our energy and we hardly have time to deal with others. But maybe if you relate to anything I'm writing, you can start your own blog, or journal , or add to mine. Just putting thoughts to paper and putting it out in the world for anyone to read helps a little.
