The ABC Cancer Diaries

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

Getting ready for hospice at home April 14, 2010

Filed under: Cancer sucks big time,Death,Pain,Thanks,Treatment,Uncategorized — wenren @ 8:15 pm

Note from husband Steven:

Wynne hasn’t been able to write the last couple days, so I wanted to quickly update everyone.

The tumor has taken over her liver and is enlarged, so there are no more chemo options.  Now they’ve been focused on managing her pain and discomfort.  Unfortunately she’s been having some pain and discomfort at times, mostly in the abdomen and back as things press against other things.   The liver is enlarged so she has a distended belly.  Also, lots of fluid in her abdomen and legs and feet from the liver.

Now she has a stronger dose of pain medicine and a PCA pump that that puts out a constant stream of pain medicine and lets her add more with the push of a button.  The hope is that the balance of dosage can be translated into a patch that she can wear at home.  And if she has any pain spikes she can add oral pain medication to it.

The doctors also said that as her body adjusts to the pain medication, she won’t be as sleepy as she is now.  Hopefully they know what they’re talking about and this goes as planned.  But at this point, I think we’ve learned to never assume anything because the body has a mind of its own.  (So to speak.)

The goal now is to get her comfortable enough that we can get her home under hospice care.  Hopefully Thursday or Friday.  Then we can relax, have visitors and be with our Precious Helen with the Amazing Hair.

Here are some words from Wynne:

“Thank you very much for all of your love and support and prayers and healing thoughts.”

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QOL February 22, 2010

Filed under: Cancer sucks big time,Death — wenren @ 8:49 pm

I just had my scan today, and am feeling a little better today than most days. Last night, I finally broke down and took some pain meds. I was trying not to because I don’t like feeling so out of it, and pain meds make you constipated! These past few days have made me appreciate days when I can easily walk, bike, or swim or just do anything active.

Cancer is so debilitating and I learned why this week. This week is the closest I have come to feeling like it is nearing the end. I mean when you can not literally catch a breath when you walk two feet or up a flight of stairs, how can you keep active? Without being active, what is the prevent your muscles and mind (in my opinion) from atrophying? I never thought about these things, but last week and my experiences now make me think of that. I never thought I would welcome the thought of a wheelchair. I never thought I would appreciate that little bench in the elevator at the breast clinic. I never thought I would spend so much money on cabs getting to doctor’s appointments. I never thought that that little button with the wheelchair icon could apply to me.

To get myself through the monotony of the days, I also dwelled in my memories. Memories of having long hair. Memories of traveling abroad and experiencing new tastes, and new places. Memories of being able to live life to its fullest. No, this does not mean I am giving up. I absolutely HATE the positive thinking BS which makes you feel like you can’t have a negative thought in the world. I don’t think I am being overly pessimistic, I am just realistic. I look over the list of standard chemotherapy treatments, and the list is shrinking. I am pretty sure that I have some idea of what treatment might oncologist might propose (other than a clinical trial) because there just simply are not many treatments left for me to try. The list looks deceivingly long, but some drugs are in the same class, so one could argue if you have failed a treatment in one class, the chances that another drug of the same class will work are not high. But of course everyone’s body chemistry is different, so you never really know until you try.

So, QOL or quality of life issues concern the cancer patient like me and even more so with my recent lung episode. I don’t know what type of QOL I can expect in the future. Will I be able to walk on my own? Will I be well enough to ever take a trip again?

What is also gnawing at me lately is that there are potential treatments that could work for me in the form of a clinical trial, but I am not eligible for those trials. And doesn’t seem like most trials have a functioning compassionate use policy or drug companies don’t like to do them, so in the back of mind I know that I haven’t tried the best possible treatment because the best possible treatment is not within reach. If there is anyone reading who might have any pull on getting me access to the trial I would like to be one, I will just say the trial that is investigating the PARP inhibitor drug BS 201 along with gemzar and carboplatin, I believe is the one I need to be on. The drug company is BiPar Sciences. Or any PARP inhibitor drug for that matter. If I get to try the drug and it does not work, then at least I’ll know.

 

Gasping for Air February 20, 2010

Filed under: Cancer sucks big time — wenren @ 4:49 am

This post will be quick (and not really edited) because the last week has been really rough. I am still in pain, and have now been to urgent care twice. Basically the pain is most likely due to an enlarged lymph node in my chest which pushed on the right lung, causing part of it to collapse. This explains the pain and why since Monday I have been very short of breath. I never knew what short of breath really meant or felt like, but basically it is hard to move around that much because then I cannot get enough air, and it is also hard to talk because I am literally gasping for air. So it is hard to talk alot because of this. The pain and shortness of breath does not allow me to do much, so shuffling around hunched over (because of pain) and sleeping/resting is all that I can manage now.

This means that my current chemo is likely not working. I don’t know what the next treatment plan would be. I do feel like I am running out of options and time because if the nodes don’t start shrinking I will have more complications. So for the first time, my cancer is causing me pain, and I am feeling crappy because of my cancer.

Today I just got back from hours in urgent care. It was almost 10 pm when we got into the cab, and we arrived around 2 pm? It was so packed, that when I left my room to get a CT scan, my room got taken, and I was pushed to the hallway and remained there for a couple of hours before they decided to discharge me. Do I feel better? No not really. They gave me antibiotics to prevent any infections that might occur in the lung, but they could not really do anything to fix the cause of what was causing me pain, so they sent me home. Not ideal, but that is the reality.

This coming Monday I still have a PET scan, and right now I am scheduled for a doctor’s appointment on  Wednesday and chemo.

I just hope I make it to Friday, which is my birthday. I am not sure what shape I will be in to enjoy my birthday. Hell, I know I won’t even be able to blow out any candles at the rate I am feeling now. I just hope to be able to enjoy it somewhat. Oh, I will be 35 years old. I think it is safe to say my only wish at this point for my birthday is to make it to my next one.

Good night.

 

Chemo moved to Friday (11/20)- For now. November 17, 2009

Filed under: Cancer sucks big time — wenren @ 10:24 pm

Argh.

So, won’t be going to chemo tomorrow because I am still sick with a cold/flu thing. Actually I don’t know what it is exactly, but it is making me miserable. The nurse at MSKCC said, “Well if you feel like coming in you could.” Who wants to feel worse?! I can’t think of anything worse than having chemo than being sick with a cold AND having chemo.

Anyway, it is tenatively scheduled for Friday at 11:15 am. No chemo until after Turkey Day!!! But I am secretly hoping that my oncologist will let me skip a treatment this week. Next week, I am supposed to be off anyway…

I am tired of seeing doctors!!

 

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.

 

Is someone really out to get me? June 11, 2009

Filed under: Cancer sucks big time,Uncategorized — wenren @ 8:17 pm

Had chest x ray today, found out I have a partially collapsed lung. I guess I’m just supposed to be sick. I’ve lost count how many times I’ve been sick this year. I guess my Chinese horoscope was right, not a good year for me in terms of health this year.

To all of you who have had few health problems, remember to be thankful.(I’m trying to be thankful right now, but it’s really, really hard since I feel crappy.)

What’s next??? After I get over this, I have chemo to look forward to.

I mean really, this is getting ridiculous. Feel free to forward me your words of strength, encouragement, wisdom, humor, etc….

 

Reason #198 why having metastatic breast cancer sucks January 24, 2009

Filed under: Cancer sucks big time — wenren @ 7:24 pm

I finally got the results of my scans back (CT and MRI), the short answer is that I now have cancer in my liver. The longer answer is that the cancer is very, very tiny, so I will still continue with the plan of trying the new trial medication, which is an anti-body. Basically I haven’t been on any treatment since December 19th, so it’s no surprise that things have gotten bigger, but having the cancer in my liver is still pretty upsetting.

I’ve been pretty much moping around, and lying low. I go between feeling lots of anger, frustration, and cynicism. It’s hard dealing with all of this, and feeling like now matter how much I try to take care of my body — it just won’t listen!

Adding to all of this is I’ve been feeling pretty disappointed in people in general. People want to help, but don’t know how or too busy, or are too self-involved, I don’t really know, but I also don’t really want to bother at this point either. Or maybe when I finally lose my hair when I get chemo, I’ll get more pity. But, why does it have to be that way?

I do have moments when I do count my blessings, and know that it could be much worse, but then the thought stabs at me again:

“I’m 33 years old, soon to be 34 and I have GOD DAMN METASTATIC BREAST CANCER! AND THAT AIN’T RIGHT!!”

It just isn’t right, but who said life was fair anyway.