The ABC Cancer Diaries

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

Here we go again February 25, 2010

Filed under: Scans,Thanks,Treatment — wenren @ 7:09 pm

I met with my oncologist yesterday and the PET scan confirmed that my cancer had progressed. It was no surprise given the pain that I have been feeling. The root cause of the pain and shortness of breath is the cancer. We are most worried about the liver because that is the most life threatening. My liver cannot be operated on because the disease is very diffuse, and it is scattered in a lot of areas, so it is not a concentrated tumor that they can just remove. Too bad because the liver can regenerate itself. The amazing human body! Sometimes I feel my liver throbbing, and I believe that is due to the cancer. So, we switched chemo treatments to Gemzar and Carboplatin, which overall is supposed to be pretty harsh. I guessed my new treatment correctly because as I said before it is not too hard to predict what comes next since the list of possible chemo gets smaller. Process of elimination.

Yesterday I got my new treatment and so far I feel okay -mostly tired. The pain from before has been better today, so I just hope this new chemo regimen works. I am willing to put up with the side effects (nausea, possible hearing loss, loss of appetite, fatigue, lowered platelet counts, hair thinning amongst other things) if it works. So I will imagine my nodes and tumors shrinking and keep on resting, and enjoying life as it is.

Thank you to everyone who has called, emailed, come over, and wished us well through all of this! We love you.

 

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.

 

PAIN! February 16, 2010

Filed under: Pain,Side Effects — wenren @ 9:58 pm

I have been lucky until now to not really ever had much pain as a result of the cancer. This past Saturday afternoon, I suddenly felt a sharp pain under my right ribs. I thought I had strained a muscle after moving a pack and play. It felt awful, and I iced the area, and took some advil. The pain persisted, and persisted. Then it seemed to spread from my under my right rib to my upper abdomen, and under my left rib. The pain has always been sharp, and almost like a really, really horrible cramp. If I had to cough, or sneeze, or take a deep breath, I would be crying out in pain. I started to take some of the strong pain meds that I have been prescribed, which make me quite loopy. It doesn’t really make the pain go away, but rather makes me high so the pain doesn’t bother me as much.

At one point, the pain was so severe that I was having trouble going from a sitting up position to a lying down position. It was a horrible feeling. We still didn’t know what the pain was being caused by and since my oncologist is away until tomorrow, my only option for seeking medical care was to go to urgent care.

So, last night my husband and I finally checked into urgent care. They ran some blood tests which indicated my liver function was normal. (That was my main worry that my liver was acting up again – especially given my history for jaundice.) The doctor also gave me some stronger pain medication, which basically knocked me out. The explanation for the pain? Well, the chemo is attacking the liver tumors, which causes the liver to swell in those areas. So this pain could actually be a good sign. I sure hope so, because I don’t want to endure the pain unless it is for a good reason! And well the pain is somewhat manageable, but I also haven’t been doing much aside from sleeping, eating, and shuffling around. Thankfully we have had help with our daughter because I have not been able to really pick her up, or assume any responsibility in the care taking. So, yes this part of having cancer has been rough. But I often think there are lots of parents out there who have chronic pain, and they would be in the same situation, right?

Hopefully the pain will start to subside soon because I do have another chemo appointment coming up next Wednesday, but I have a scan before then, so we should know if this next treatment is really working.

 

Radioactive Mama February 8, 2010

Filed under: Being a mom — wenren @ 7:35 pm

So what it is like to have advanced cancer and be a mom?

Mostly, my life right now is mostly about being a mom. The cancer makes it so that I need to have help to care for our daughter once a week. The day after chemo is a bit rough, but I usually start to feel better a few days after. Having cancer and being a mom is not unusual — plenty of women get diagnosed with cancer after they have kids. But my specific situation is rare. I already had cancer, and decided to have a baby, and did so via surrogacy. Most people (by most I mean those in charge of domestic adoption, and international adoption and foster care) would not deem me a fit mom because of my health situation. It is very controversial. Do I have a right to have a child given that my life expectancy is so tenuous? I don’t know, but somehow it seems like other people should not be making that important decision for me.

So, I am very aware of this dilemma, and when I am a “mom” I don’t talk about cancer with other moms. I don’t want to scare them or freak them out, or become a pity case. I just talk about mom things like sleep schedules, diapers, and poop.

Who has a right to become a parent is such a tough issue because I do feel like I have so much to give. I mean how many mommies play live Mozart on the piano for their babies? And sing to them daily, and speak another language with them? So, I am grateful to have this opportunity because most women with my stage of cancer do not get that chance. Honestly, it also makes me feel at times that I need to prove to everyone that I can not only be a good mom but be a better than average mom because I need to feel like my cancer does not hinder my life in any way.

In a few weeks, I will have to have a PET scan, which makes me radioactive. So, I called my doctor’s office about how radioactive I would be because I do not want to endanger my child at home. They told me that I would have to wait at least six hours to be safe to be around her. Normally I just go home (via the subway) after the PET scan, and it kinda makes you wonder if I am harmful to adults or the other people I come into contact with. So specifically, this is one of the things that is a bit tough about having cancer and being a mom. After my scan, I guess I have to hang around for a couple of hours until I can go home. I am not sure yet where I will go for six hours because usually I am tired after the scan, and have to pee alot. Maybe I should just go see a movie? Or go get a massage? Anyway, if anyone has suggestions or perhaps a place I could crash afterwards (assuming you don’t have kids) that would be great!

 

Club Chemo-Wednesday February 3rd, 11:30 AM February 2, 2010

Filed under: Uncategorized — wenren @ 8:53 pm

Join us for club chemo tomorrow! The usual place 300 east 66th 3rd floor.

Club chemo has missed some sessions due to a minor stay at the hospital, but we  are back on schedule!