The ABC Cancer Diaries

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

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.

 

I Vant to be Alone. October 20, 2009

Filed under: Uncategorized — wenren @ 3:22 pm

This is my best impression of Greta Garbo. Lately, I have found solitude to be my best companion. And when I read Dana Jennings post (Dana Jennings writes about his experience undergoing prostate cancer in the NY Times), it really resonated with me.  I think lately it just feels depressing to me and to others to have to say, “No, my treatment is not working. I don’t know what will work yet because that is the nature of the game. But I have failed a treatment again.”

I guess I may also feel so “alone” in my dealings with this disease that it just feels much more comforting to be with my own thoughts and feelings. I don’t have to explain how I feel to anyone else, or put on a nice face or explain why I need to leave early because I am just too tired. Yes, everyone says you don’t have to put on a nice face, but it is hard to “wear” my cancer all the time. Because at times everywhere I look I just see people who don’t have to struggle with this illness, and it is alienating (especially in this month of pink), but there isn’t much I can do. I haven’t exactly made a best friend with someone else who also has metastatic breast cancer, but I have found support there when I needed it. It is strange to try to become close friends with someone who clinically happens to have the same disease. Sometimes, you realize that that is what you most have in common, just the illness. In the meantime, I am fine doing my own thing, and being at home.

In the meantime, tomorrow I have potentially my last round of Taxol/Avastin. Next week I have another CT scan, and doctor’s appointment to figure out the next step.

So, here is Dana’s article.

 

Happy Metastatic Breast Cancer Awareness Day Everybody! October 13, 2009

Filed under: Metastatic Breast Cancer Day — wenren @ 9:57 pm

Good news on my scans, Well I think I was a bit too optimistic regarding my scans. They are not quite stable, and a change in treatment in the near future will be a reality soon. But today is still a special holiday! No pink ribbons for this day. This is a way for us stage IV-ers to get some meaningful recognition. We’re here, we’re living. Some of us still run, and swim, and play piano and take lessons and cook! Many cities (including New York, Princeton, NJ, and Tampa, Florida) have recognized this day!

This article by the President of Metastatic Breast Cancer Foundation says it all about what is like living with metastatic breast cancer, and why many of us do NOT appreciate or like the pink ribbon culture, and all the cause marketing that accompanies it (Yes, that is what it is called cause marketing – to get you the consumer to buy more. We all have enough stuff already, donate to a research foundation, hospital, or donate to MBCN, or hell donate to an individual. Also, donate just doesn’t mean money either, your time and energy are far more valuable.) I can’t tell you how many times I cringe when I see pink or ribbons. Anyway, please read on.

By Ellen Moskowitz – President, Metastatic Breast Cancer Foundation

Oct 7, 2009 – 10:23:33 AM

(HealthNewsDigest.com) – It’s October. The pink ribbons are out. Survivors flock to tell their success stories. We hear how they fought hard and won the battle and can now move on and get back to their life – usually as a ‘better person’ for the experience. We all applaud. It feels good. There is closure and we all love closure. But what about the 30% of those with breast cancer whose cancer has spread beyond the breast to the bone or a vital organ ( usually the lungs, liver, brain)? That 30% is the metastatic population.

Everyone knows someone who had surgery, chemo, radiation and then struggled with their fears and finally got their life back on track. Everyone knows someone who died of metastatic breast cancer. What people don’t know is that, in the United States, there are 155,000 of us currently living with metastatic breast cancer.

CANCER IS A GROWTH – NOT A GROWTH EXPERIENCE

Those of us living with metastatic breast cancer don’t have a story that can be tied up with a pretty pink ribbon. We don’t ever get to move on and get back to our life. Cancer treatment IS our life.

There is no cure for us BUT there are treatments – and we stay on treatments forever. And that is a good thing. The bad news is that the cancer cells learn how to outsmart the treatment drug, and then the treatment fails us and we need to go on to the next treatment – always living with the fear of running out of treatments. It’s the feeling of being in an eternal race.

We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure. Our treatments go on and on and on – we hope for a very long time.

METASTATIC BREAST CANCER AWARENESS DAY

Back in 2007, several of us living with metastatic disease were sitting around Nina’s dining room table, struggling for ideas. What could the Metastatic Breast Cancer Network (MBCN) do to help bring this disease out of the shadows? We realized that if we were to ever impact funding and research to extend to those whose cancer has already spread, we would have to bring awareness to this disease and get us out of the shadows.

It was Amy who suggested a proclamation declaring a special day in October for metastatic breast cancer. She contacted Mayor Bloomberg’s office in NYC and we got the proclamation! Feeling thrilled, we sent out a copy of the proclamation to all 250 members of MBCN. Next thing we knew, Meg in Princeton, NJ got a proclamation, as did Living Beyond Breast Cancer (lbbc) in Philadelphia, along with a proclamation from Buffalo Grove, Illinois.

In the spring of 2008, a member in Maine wrote to MBCN announcing she got a proclamation from the Governor of her state. Our awareness campaign kicked into action! We email blasted our then 900 members requesting they contact their mayors and governors to get proclamations for Metastatic Awareness Day. To our amazement, within 48 hours, we had over 150 responses!

We heard from members across the country, and they sent the email on to their friends, and we heard from them too. And we heard from women across the various oceans.

WE HAD HIT A CHORD

Some of the responses we received included….

I want to shout. Many of us are living isolated, with great sadness that we may not be around for long. I will fight this disease with humor and positive thinking, but sometimes that goes so far.

Thank you for your efforts to make all of us with stage 4 BC heard. This is a difficult kind of struggle for as long as we are going to be able to exist.

We need to let everyone know that we want to be taken seriously, not just people waiting to die–but people fighting every minute to live.

When breast cancer is discussed on TV, we never hear the word metastatic. Let’s show the metastatic face–stand up ladies, for you are fighting the battle in ways that give the word COURAGE a new meaning.

I’ve been living with metastatic breast cancer for nearly 5 years–and people DO NOT UNDERSTAND the never-ending nature of this disease.

Thank you for helping us come out of the shadows and into the light.

I have felt very lonely and different from all my breast cancer friends. I am in a different category. People say I am so glad you are cured and it’s uncomfortable and hard for them to get my situation.

My mother passed away from metastatic breast cancer and this is the first time I’ve seen in words described how she felt exactly. I will speak out for her.

AWARENESS OF THIS MISUNDERSTOOD DISEASE

Today MBCN has 1400 members. As I type this, proclamations are coming in from mayors and governors across the country. Last July, MBCN spearheaded National Metastatic Awareness Day by sending a group of patients with metastatic disease to Washington.

Awareness is growing. Our faces are being seen. Our voices are being heard.

We need this disease to be understood by the breast cancer community, the medical community and the public at large. We need to bring attention to our cause so that research will focus on the process of metastasis in order to develop more and better targeted treatments to extend life and make metastatic breast cancer a truly chronic disease.

For more information on Metatsatic Breast Cancer Awareness Day, visit Metastic Breast Cancer Network.

Click here to learn more.

Now if you feel inclined to donate, please do, but please don’t buy anything pink! You can read my opinions on how I feel about pink ribbons on the upper right hand corner.

 

Scans are stable! (Re-edited)

Filed under: Scans — wenren @ 2:49 pm

YAY! Perhaps this was a little premature. I will most likely switching treatments soon.

(I will write more later, but gotta practice piano.)

Tomorrow is my next chemo, sometime around noon. I will see my doctor at 11:15 am, and then have chemo. I hope the wait isn’t too long. Feel free to text or email for a more accurate update!

 

A Marathon Session of Getting Poked. October 12, 2009

Filed under: Cancer sucks big time — wenren @ 8:12 pm

My last chemo appointment, I had a sort of marathon session at MSKCC. Since everything is now in one building, it was relatively easy to get everything done, but last Wednesday I was at the clinic from 8 AM until about 5 pm.

Unfortunately, I noticed some larger lymph nodes in my pelvis. I don’t know if it is related to the cancer, but being metastatic tends to make one worry more than usual about these things, so I emailed my doctor, and spoke with her nurse. She promptly changed my appointment so that it was the first one that day so that she could order scans and such. So she checked it out in the exam room, and ordered an ultrasound to make sure I didn’t have blood clots (Avastin, one of my drugs causes blood clots.) and a chest, abdomen, pelvis CT scan. As I write this I am starting to worry about insurance because my insurance normally requires that I am pre-approved for CT scans, but that will have to be another post for another time. I will just say that it is bad enough to have cancer, and worse to have cancer and worry about whether or not your insurance company will pay for your treatment.

So I managed to get all my tests done, but I think I set a personal record of the most shots in one day! Four.

  1. Flu shot (Because I am immune suppressed and therefore high risk of getting infections.). This was administered in my right bicep, and boy was my arm sore!
  2. Blood draw – a small pinch and stab on my middle right finger to check my blood counts
  3. Accessing my port for chemo — they thought I could get my contrast injection via my port, but it didn’t work, so I was left “attached” for later once it was time for chemo
  4. Contrast injection for Ct scan – I had an IV started in my right arm so they could properly inject me with contrast.

Oh, did I mention that the next day I flew to the west coast for a wedding? It’s not easy trying to have a “normal” life with cancer, and I am reminded of this every day. At least my veins are relatively decent, it really sucks when your veins don’t cooperate and you have to have an IV put in.

So, I am still awaiting scan results, but I do know that I do not have blood clots (which I was pretty sure of.) I do not know yet how well the new treatment is working until Tuesday (tomorrow.)

Oh, and chemo club will be this Wednesday around 12 pm. Email or text if you think you can make it! Thanks.

 

NEW TIME! Club Chemo: October 7th, Wed 9:30 AM October 2, 2009

Filed under: Uncategorized — wenren @ 1:57 am

They changed my chemo appointment again because I have to see the doctor tomorrow at 8 AM!!!

(Sigh)

My time is never truly mine as a cancer patient. See you tomorrow, if you can make it.

300 East 66th Street, 3rd Floor at second avenue.

 

Breast Cancer in Pictures

Filed under: Articles of interest — wenren @ 1:56 am

I saw this today in the NYTimes.