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Archive for September, 2008

Whew!

After a long couple days of waiting I got my ct test results and the cancer continues to be stable. Needless to say, a huge relief! I see the med onc next week and the gyn onc the week after so we’ll see what they have to say, but I suspect not much (at least about that).

I took my 8 steroid and 2 benadryl pills the night before and luckily the benadryl won out and I slept through the night. The next day I was told not to take the next set till I got to the scan place. Normally it takes an hour after you drink the barium before you get the scan, but because I had to wait to take the pills and they needed 2 hours to work I had to sit in the waiting room a long time. The scan went fine, but then I had to sit outside the scan room in the hallway where they could watch me for a half an hour to be sure I didn’t have a reaction. I was fine but my iv was still in my hand (my arm veins were practically non-existent that day) and must have gotten moved and I had a little bloody mess on my hands (haha) so they just took it out (they like to keep it in for emergency drugs, when I had the allergic reaction last time one of the first things they did was put an iv in). Thankfully A. had driven me (and was so patient sitting in the waiting room for almost 3 1/2 hours) as I was exhausted by the time we left. Later that night my face and chest were flushed and hot, but I just decided to go to bed early and was fine the next day. I don’t know if it was a “reaction” to the dye or not, but I’ll let the med onc know about it when I see him next week.

Meanwhile the rest of my health needs dealing with. My back pain continues and acupuncture is not working anymore (in fact my last treatment made things worse so I have stopped for now). I started seeing an osteopath for mild manipulations which seemed to be helping initially, but doesn’t seem to be helping much anymore. So about a month ago I increased my pain medication and that seems to be helping the most. Only problem is the pain medication (ibuprofen) is making other things worse, like my blood pressure and now my liver function tests are elevated. Last week before the liver function test results, my internist had me try using one ibuprofen with one EX tylenol instead of 2 ibuprofen (4x/day) to see if that might help with my blood pressure. First, we needed to see whether it helped with the pain, and so far it’s not bad. Maybe not quite as good as just ibuprofen, but not too bad. Only problem is tylenol is even worse on the liver. I’m still taking it but need to see whether he wants me to continue or go back to straight ibuprofen. Sigh… I’m trying to avoid narcotics or anything that will cause cognitive issues, but it’s getting harder and harder to do. Meanwhile I’ve upped my daily dose of milk thistle (an herb which helps the liver deal with crap that I used to take during chemo, but had been only taking a low dose of since then) to see if that might help. I’m supposed to get retested in a few weeks and we’ll see where we are then. Also we’ll see if my bp goes down, if not then it will be time to start bp meds too. I hate all this medication stuff, everything has a side effect and interacts with something else and I feel like I’m juggling and can’t keep all the balls up in the air. But it’s all necessary, I absolutely can not live without pain medication at this point, so we’ll have to figure out something.

And I suppose we will figure something out, and then things will change and we’ll figure something else out. Just part of getting older, especially when there are multiple health problems. At least I have the wherewithal to research my options and be an active participant in the decision making process (or does that actually make it harder? maybe in a way it’s easier to just do what a dr. tells me to do, but that will never be my style). And as much as I hate going through these scans every 3 months I know that so many others are going through the same thing and there is some strength gotten from knowing I am not alone.

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Night before the test

I always hate the night before the test. Not a math test or a history test (which I can still have nightmares about, you know the one where you haven’t gone to class all semester and show up just in time for the final) but my three month ct-scan. This one is double the fun because I have to take 8 steroid pills and 2 benadryl at 10pm tonight and again in the morning when I get to the scan place (because of the allergic reaction I had to the iv contrast dye last time). I have no idea which drugs will win, the steroids which will make me hyper and not able to sleep, or the benadryl which normally would knock me out. Normally I drive myself to my scans but with this lovely new allergy A. will be doing it. He’ll also have to pick up Z. from school and bring her to piano lessons in the afternoon as the barium I have to drink for the scan usually gives me tummy troubles for the rest of the day.

Oh joy!

So, think good thoughts that all will go smoothly tomorrow and that I get good results (I am hoping I will know by Friday, but we’ll see).

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My sister Lisa

SU2C

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!

SU2C

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School so far

Z. just started back to school on Tuesday (just a few hours that day, full days since) and on Wednesday came home all excited about everything! She talked and talked and talked all evening about all the things that happened that day. Changes from last year, stuff with her friends, you name it, she talked about it. It was so nice to see her so happy, especially since this is the first year of Middle school. Granted in her small private Quaker school it’s not the same experience it might be in a public school that feeds a lot of elementary schools into one middle school. She knows all the kids in her class except for the one new kid (who she knew a little bit because he visited their class last year as part of his admission). She’s in a different building, but a building she knows well because art, music, science and Spanish classes have always been there. She’s never had this teacher before, but she knows her, and the assistant teacher from last year moved over with them so she obviously knows him. 

Let’s hope this lasts and it’s a smoother transition than it usually is for a new year. Usually it takes her a few months to really get into it, so this early excitement is encouraging.

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