My sister Lisa

Tonight there will be a tv show on ABC, CBS and NBC for Stand Up 2 Cancer. Today there will be blog posts all over cyberspace devoted to cancer and how it has affected our lives. Cancer has obviously affected my life, I've had two different kinds and am currently in treatment for a recurrence of one of them. But I don't want to write about my own cancer today, I want to write about the cancer that in many ways has affected me the most, the cancer that took my younger and only sister Lisa away.

I am the oldest of three children, my sister Lisa was born almost 5 years after me (our bdays are one week and one day apart). I remember her joining our family, and I have to say that I wasn't all that thrilled at first. You can't really blame me, I had my own show so to speak, and this baby came in to take over everyone's attention. I remember feelings of regression, like wanting to try her bottle (and when doing so decided YUCK!) and being generally cranky about the whole thing. But as you can see in this photo above, there was some pride there at being the older sister I think.

Lisa and I weren't super close growing up, since she was closer in age to my brother (who was born three years after her) they tended to be put together a lot. I remember thinking that she was really beautiful when she was little. She was blonde (I was dark haired) and had long flowing hair. I also remember when she reached a certain age (I can't remember, maybe 7?) and wanted to talk and have us all listen to her intently. Only once she got our attention and started talking she would get stage fright and forget what she wanted to say and would say a lot of "um's" until finally, just as we were all ready to give up on her, she would begin to be able to say what she wanted to tell us.

When I was in high school she was my accomplice, helping me to get away with things. Like the time I was grounded (forever I think, it was an open ended grounding, my parents were really pissed with me) and wasn't supposed to see my boyfriend. I took her and her friend to the movies and met my boyfriend there and she kept my secret.

She was more into girl things like makeup and clothes than I was. In fact she was the one who taught me how to apply makeup (when I was already in college), not the other way around. There were many ways that I thought of her as the older sister. It never really dawned on me that she would view me as the older one or look up to me in any way.

When she got engaged, (they were married the year after A. and I were), we bickered a lot as the wedding approached. When she got back from her honeymoon she was a different person, happy and confident and much less moody. We started to get along better than we ever had and by the time she had her first child a few years later we were very close and on the way to becoming best friends.

She had her older children before I had Z., including her third child who was born with a rare genetic birth defect and died three weeks later. I will never forget the morning she called to tell me she had the baby but that there was something wrong.

Later, I got pregnant with Z. and a few months later she was pregnant with J., her 4th and last child (however because Z. was born almost three months early the kids are about 6 months apart in age). She was my "expert" and support through my short (29 weeks) and difficult (hospital bedrest for 7 weeks) pregnancy and during those early years of first time parent confusion and self-doubt.

Shortly after Z. turned one I was diagnosed with stage 4b vulvar cancer. I went through chemotherapy and amazingly survived (and continue to be NED-no evidence of disease- from that cancer to this day). Less than two years after I was diagnosed with that cancer I got the phone call from Lisa that she had found a lump in her breast. It was the first of a lot of bad news phone calls.

The lump turned out to be cancer (ductal carcinoma with two positive lymph nodes- Her2-nu positive, an aggressive type of b/c) and she had a lumpectomy and began chemotherapy. Since I had been through it I was able to be a support to her, giving her tips on how to get through side effects and understanding how she felt during the various stages of the chemo cycle. At the time I thought that maybe one of the reasons I had had cancer and survived it (besides to be there to raise my daughter of course) was to help her through hers. She was very pragmatic when it came to dealing with cancer and the treatments. It was "tell me what I have to do and I'll do it" kind of thing. When people told her she was strong she'd say "what choice do I have?", never even fathoming that yes indeed, she had a choice.

It was a long treatment (after chemo she had a mastectomy and reconstruction and radiation) ending over a year after she initially found the lump. The surgery showed that she had some inflammatory breast cancer cells along with some in situ cells. This was more bad news, as IBC is even more aggressive than what she had initially been diagnosed with.

She had about 9 months of feeling good and enjoying her life. She and her family moved to a new town and a brand new house and she threw herself into all that setting up a new home entailed. Then one day I got a phone call, she felt a lump in her neck. We knew this was bad news yet again. While we both knew that given the aggressiveness of her disease it would probably come back, we thought (and hoped) that she'd have a much longer period of time in between. 

So it was back in treatment, basically never ending chemotherapy. She would go from one drug to another as each one would stop working. Each drug had it's own particular side effects, some easier and some harder than others. Mostly she was able to continue on with her life and raising her kids. I tell you, I have been on chemo twice, for about 4 months each time, and can't even begin to imagine how she went through about a year and a half of constant chemo. She told me at one point that she knew that if she stopped chemo she would die, that it was keeping her alive. She was right, she had to stop chemo about three weeks before she died.

About a year after the recurrence she began to have very bad headaches. After two weeks of this she told the dr. and had a brain scan. The cancer, which by this point was spreading all over the place, including the lungs, liver and bone, had now spread to her brain. We spent a weekend with her shortly after this diagnosis, before she began whole brain radiation treatment. Her oldest son took some pictures of us, one of my favorites I have of the two of us. When I saw her about a month later, after radiation and massive daily steroid doses she was a completely different person. The steroids had changed her body and face, causing her face to get completely round and her eyes to slant a bit. She had lost her hair and was wearing a wig (which of course she had been through a few times before). 

I remember when I saw her I was shocked, how could someone physically change so much in such a short period of time (if you hadn't known her very well you probably would not have recognized her). I was so angry! Most people didn't really understand why it upset me so much, after all she was the same person inside and it's just a "superficial" thing, the way we look and viewed it as a selfish and bigoted reaction on my part. But it was not that simple. This was an outward manifestation of all that cancer had taken away from her, not only was her life consumed with treatment and side effects, her family being put through the pain of living with this, it had now taken away her face and body and replace it with someone else's. This made me very angry. I wanted my sister to have her life (and body) back. I wanted the damn cancer to leave her. I wanted her to live a long and healthy life. Seeing her this way took away any ability for moments of denial (maybe those with cancer will understand how important those moments of denial are, how they help us get through the day).

She lived about another 9 months, 9 months of more and more physical struggle. Blood clots, heart problems, breathing problems and having to be on oxygen all the time. By the end it was getting harder and harder for her to function, she couldn't lay down flat or she wouldn't be able to breathe. She was on massive amounts of pain meds, but was incredibly lucid, even to her last moments. She was amazing, she never actually became bed-ridden (although if she had lived a little while longer she would have been). The day before she died was Thanksgiving and we weren't together but talked on the phone. At the end of our phone call she told me she had to get off and tell my mother and her family how to cook the meal, they weren't doing it right. It was the last time I spoke to her. I found out days later that she had actually called me back (it was on our voice mail) but as I was busy with our Thanksgiving meal and guests I didn't hear the phone and get the message till after we got back from her funeral. The night before she died she stayed up with her husband and kids and played board games. The day she died she was making plans, trying to get the dining room ready for her hospital bed which had arrived a couple days before and asking her husband to go buy a small tv and get the cable company to hook it up for her (which he did not do, he knew that time was extremely short, even if she did not). She was never willing to admit defeat, each new thing was a new challenge to deal with and overcome. That same morning a visiting nurse came, took one look at Lisa and called an ambulance. She died in the ambulance in her own driveway, her husband by her side.

Living without Lisa is hard, it still hurts as much as it did at the beginning. There is still a big hole in my life where she was. I still talk to her, I still hear her giving me her no nonsense advice (I am the kind of person who thinks every decision out to death, she was more of an action type person), "just go ahead and do it, what's the worst that could happen?". I have close friends and close family, but it's not the same as a sister who was also your best friend. When a certain part of me hurts, she was the one who I talked to, she was the one who could ground me, she was the one I could giggle hysterically with for no apparent reason. We could just be together with the calm knowledge that we belonged to each other forever, we were sisters. 

I get angry with cancer, angry for all that it has taken away from me. I am not the same person I was before cancer, physically I am now what I call a "high maintenance" person, all the crap I have to deal with on a daily basis because of cancer and it's treatment's side effects. All that is so minor compared to losing Lisa, and to the fear of how my family will cope if cancer ultimately takes me. I don't want anyone else to have to go through this, but as I know all too well, way too many people are going through the same thing. Rather than holding all this anger inside I try to deal with it in part by participating in weekly support groups, art therapy, and getting involved with certain cancer organizations that I believe in, like The Wellness Community, Livestrong and Standup2cancer.org. 

Cancer is not one disease, but many diseases. It makes it very hard to find a cure so we really need our top people working on this now. Standup2cancer.org is dedicated to just this, putting together dream teams of scientists and helping to fund them, as our government has decreased funding for cancer research over the years (when you adjust for inflation). It is up to us to stand up and fight, to not just leave this in other peoples hands. Get involved and Standup2cancer!