The ABC Cancer Diaries

A young, American-Born-Chinese woman living with metastatic breast cancer

Worried. April 4, 2010

Filed under: Dealing with cancer emotions — wenren @ 6:58 am

I am glad to be back home. And on Saturday really tried to have a “normal” day. Saw a friend in town for breakfast, met my husband after frisbee, walked around park slope afterwards. It was nice. But I am still worried.

They figured out at the hospital that I have pancreatitis, which explains why after I eat even small amounts of food, my upper belly fulls uncomfortably full and hard. Pancreatitis means your pancreas is inflamed and irritated. This is supposedly all due to an allergic drug reaction. While I am not getting any worse, I don’t particularly feel tons better since having symptoms, so I am worried.

I am worried that once I start chemo, it will get worse, because my body will have yet another disadvantage to healing. I am worried (and paranoid) that this pancreatitis could be a symptom of pancreatic cancer. (It runs in my family.)

I want to feel like my normal self so badly, but my body just isn’t able to do it. I often feel tired, and cannot walk as fast as I used to. Most of my clothes (especially pants) don’t fit me right because I am so bloated from the pancreatitis, and generally feel icky at times. Oh and of course there are the radiation effects — which make me foggy headed, and generally slower. It is hard. I think about myself, but often times now I realize I am thinking about my past self. Whenever I see people being active (running, biking, walking briskly) I think that used to be me. Though I still try to think I will get there, but it will just take time, I guess I just want a little break from all of this.

But in the meantime, I shaved my head Friday night after I got back home. The radiation will make your hair fall out and it was starting to come out and have that dead hair feeling, so I just shaved it. This time around it was liberating, and I have a series of photos in which I go through various punk hairstyles, before ending up with the close buzz cut. I will post them once I get them downloaded.

Okay, I should go back asleep as it is nearly 3 am.

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Thinking About the End. March 31, 2010

Filed under: Dealing with cancer emotions,Death — wenren @ 2:29 pm

Lately I have had alot of time to think. Given that radiation makes me so tired, I just can’t really do much else at times. Sometimes it is even too much to lie in bed and read. So, I have lots of time when I just lie in bed listening to music and think. I have had a lot of different thoughts and emotions swishing around in my head, but none is as powerful and immediate as thinking about the end of my life.

No this isn’t going to be a depressing post, but a pragmatic post. I have always valued the pragmatic side of myself, and well we are all going to die, and unfortunately given my cancer diagnosis it is likely that my deadline is coming up sooner than most who don’t have a terminal illness. Though of course we never know what life will give us.

Wondering how much longer I will have is a hard thought to be with all the time. But, lately when I am not feeling so tired, when I think about this I am not scared about the lack of time per se. I am scared that I won’t be able to do everything that I want to, and hope to at least enjoy the summer sun with my family. My mood is a strange mix of that “Bucket List” feeling of all the wonderful things that I will try to squeeze in (that cliched getting a new lease on life feeling.), and wanting to reinforce and pay attention to all my relationships with friends and family, and to accept gradually “Hey this is my life. It is what it is, and I have to make the most of it.” I have thought about God, or whatever higher being up there, and wondered about karma and justice and just end up coming to the conclusion that life is not fair and life is difficult, and that is just the way the cookie crumbles. I do also think about brighter days and imagine better results, and a more carefree spirit in a few months.

But I don’t want to delude myself from the bracing realities of what I am facing. After radiation, I am back to chemo and I really need this chemo to get everything in control — especially my liver (and potentially the lung). That is probably the biggest danger to my immediate comfort and life force.

I think about hospice and what that time will be like. I assume that that will be the conclusion before the end of the chapter. Sometimes I think well I may not make it to hospice, things could be more immediate. But I often lie in bed imagining hospice and staring at the peaceful blue wall in our bedroom, and how I may be completely out of it, and in pain (at times). But ultimately I know the point of hospice is to make you comfortable, so I do see it with solace.

I think about these things not because I obsess about them, but I need to feel PREPARED. Being prepared has always helped me overcome any stressful situation (ones that you can’t usually predict the outcome). I remember my first year as a high school Chinese teacher — my lesson was probably enough for 2 hours because I didn’t want to run out of stuff to do!!!! The horror of blank, awkward faces staring back at you!!! I always try to get to new places extra early. I obsess about running out of food/supplies, etc….Anyway I know that perhaps my overzealous attitude towards being prepared has helped me in the past, so I am not about to stop now.

And you know of course I think this post might be all moot if things do get better, but I at least will be glad that I have thought about it and shared them with you all.

Thanks for reading.

 

Scanxiety and Cancer Vacations October 30, 2009

Filed under: Dealing with cancer emotions,Uncategorized — wenren @ 2:29 am

I haven’t written as often lately because I have been waiting to find out results of my scan that I had yesterday. Yesterday was hard because I had a really, really long wait at MSKCC. Longer than usual. I was frustrated and hungry, and grumpy by the end. I always have to fast for CT scans, and when things get delayed it just means that I am hungrier, and thus grumpier!

I left my apartment at 10 am for an 11 am appointment. (Actually the test was at noon, but I had to come an hour early to enjoy my special drink, which is iodine contrast mixed with crystal light.) I didn’t get the drink until 11:30 am, then 45 minutes later I go into the second waiting room after changing clothes to wait to have an IV put in. Normally the wait is not too long once the IV is put in, but I must have waited a good hour with the IV. All the oral contrast makes me have to pee alot, and then I am cold because you have to wear a flimsy gown. So I had to drag my IV pole with me twice to use the bathroom! After seeing me in the waiting room, even one of the nurses said “You are still here?!!” At these points I have often felt my spirit crushed, and I just stop asking what’s going on because I figure that there is some reason this is happening but there just isn’t much that can be done about it. Overall these experiences make me feel quite helpless, passive, and resigned. When they finally brought me into the room to have my scan, I did ask them what the hold up was and told them this was the longest I ever had to wait. The technician apologized profusely, and was very nice, but said they had some emergency cases that they had to squeeze in. And in the end the actual scan part takes 10 minutes. I was done by 2 pm.

My preliminary results say that the scans are stable, and I will see my oncologist tomorrow for more details.

So, now that I am not working what am I doing? Taking piano lessons, practicing piano, and generally trying to be good about exercising (mostly swimming). Honestly, my best days are when I feel relatively normal and don’t think about cancer. Or get to have a temporary vacation from Cancerland. The past few days have been filled with alot of worry, and literally pouring over a list of common chemotherapies and looking at which ones I have already done, and counting how many I have left to try. Then comes the obsessive mental calculation of how much time (I average 4-6 months) I would potentially have on each chemo until there isn’t any viable treatment left for me to do. Fun, huh?

That being said, as autumn sets in, and the leaves fall, I do notice that beautiful tree in the park with gorgeous reddish orange leaves, and feel grateful that I can still walk, and bike, and swim on occasion, but my life and especially thinking about the future is still scary. I still do wish that this hasn’t happened to me, but ultimately I don’t really have a choice (We’d all like to think we are in control of our lives, but then stuff like this happens and says “HA!”) But I persist, and  still try to live in the present and enjoy each moment. It’s so hard. I knew life wasn’t easy, but I didn’t know that life could be this hard.

Well, the end of October is soon upon us, which means I survived another pink month of awareness! Which reminds me, what was the worse pink product you saw this October? I think mine has to be the pink hats, wrist bands, and cleats, and other junk that the NFL wore one Sunday.

 

More on being strong, brave, etc.. September 10, 2009

Filed under: Articles of interest,Dealing with cancer emotions — wenren @ 5:04 pm

Thanks Danielle to pointing out the latest in when people comment how strong you are for fighting cancer, etc.., etc.. As you will see and as I have blogged on this topic before, it is often not appreciated by those dealing with cancer. We do the chemo, the scans, put up with the side effects because we have to. The other choice would be to curl up into a hole, and deny the whole thing. I feel and believe that anyone else in my shoes would do the same. But it doesn’t mean that I don’t get scared either. There are times (like between now and Monday) when I am at times terrified because I don’t know what the results of my scan will be, or what the next steps will be or when I will run out of options. Anyway, it’s good that this issue is getting out there.

Here’s the link to the article.

 

The Meaning of Life July 16, 2009

Filed under: Articles of interest,Dealing with cancer emotions,Death — wenren @ 3:22 am

Here it is — it’s all in this article, from the Wall Street Journal. No joke! I found it very interesting, uplifting, and inspiring.

Finding the Meanng of Life.

 

Gotta keep on dancing January 19, 2009

Filed under: Dealing with cancer emotions — wenren @ 8:53 pm

When dealing with uncertainty, you search alot. You search for answers even though there aren’t any. It’s frustrating.

I just saw a posting on a bulletin board for people dealing with metastatic breast cancer, and I found a link to an article that led me to a quote:

She said no one defeats cancer; cancer is a dance partner you don’t want and don’t like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. I never forgot what she said, and think she is right, and the words we use about cancers and wars matter more than we know.

–Taken from Brian Doyle, “On Not ‘Beating’ Cancer,” from Oregonlive.com

Cancer is a dance partner that no one wants! Often people speak of “battling” cancer. No one I know has ever wielded an axe to cancer. (If only it was so easy!) No it’s a complicated dance that keeps changing pace, and I never seem to get the steps!
Usually just as I learn the steps of one treatment, it’s time to learn switch to another! Let’s just say that I finally learned how to waltz, and now they expect me to rhumba?!?!?!

No wonder, I’m confused and frustrated!

And the other part of the quote which has some key points for me:

Maybe if we celebrate grace under duress rather than the illusion of total victory we will be less surprised and more prepared when illness and evil lurch into our lives, as they always will; and maybe we will be a braver and better people if we know we cannot obliterate such things, but only wield oceans of humor and patience and creativity against them.

I couldn’t have phrased it better. So here’s to learning how to rhumba, samba, foxtrot,  mambo, hustle, do the macarena, electric slide, lambada, forro, tango, cha-cha, salsa, and jitter bug!