The ABC Cancer Diaries

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

March 31st, 2010-Done with radiation!!!!!!!!!! March 31, 2010

Filed under: Radiation — wenren @ 2:36 pm

I just finished my last radiation treatment this morning! I almost started crying on the table as the machine was put into position — thinking about this entire process. The technicians were so nice, and even gave me a small little toy for our daughter. They wished me well and gave me a hug. Then I went out to meet my husband in the car (he drove me back and forth everyday and just waited while I got zapped and then circled back around to pick me up.) I am so grateful to have him be able to drive me because I could not have done this any other way. When I climbed into the car, I could feel the tears flowing and said “Thank you sweetie. I could not have done this without you.”

I feel such a relief to be done with radiation, but now I must focus on getting back to chemo. I want to thank everyone for their help and support — I hope you know how much it really means to me.

 

Thinking About the End.

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.

 

Receiving Help March 27, 2010

Filed under: Help — wenren @ 7:23 pm

I have always prided myself on my self-sufficiency and independence. I don’t like asking for help. I feel guilty about it. Always. I feel like I should be able to do the things I need to do no matter what else I have going on, and usually am able to work out the situation eventually. This way, I also don’t feel disappointed when help does not come through for one reason or another because I’ve already convinced myself that I didn’t really need it anyway, and somehow I will manage.

This has all changed recently. I have just been so tired by the radiation, and having to go in everyday this past week, that I realized I needed help, and I needed to learn how to ask for it. I needed to quell and shush the little voice, “Oh! What she needs help even if her husband is home!” “Oh how luxurious to have help during the day, and at night.” Or “What they need help so Steven can go to Frisbee?” But I can’t help it. (Pun intended.) Somewhere along the lines of my childhood, I learned that asking for help was imposing on others, and I am still trying to get more comfortable with it, and quiet the guilty feelings.

Of course if I knew a friend who was in my exact position (getting brain radiation, and having a small baby at home), I would not think twice about helping. I would feel good about helping. I like to help others and try to do so. But when it comes to myself, somehow I treat myself more critically. But I am working on it, and this experience has forced me to do so.

One of the things I realized is that some days I am too tired to explain what help I need, so after I put down a request I write down all the instructions (say if the help is helping to cook dinner or do laundry) so that I can preserve my energy and lie down when people come if need be. It felt weird at first, but then I realized people appreciated it. I guess I also realized that even though I don’t have the energy to cook dinner, cooking in general is a joy that I get in my daily life, and that shouldn’t be taken away just because I am undergoing radiation! It is just that I don’t physically have the energy to do it all. So two nights last week, friends came over and did the cooking either by my written or verbal instructions, and then it was satisfying to me to feel like I had a home-cooked meal, but I think the friends also appreciated getting an insight into my cooking processes. (My cooking is informed by recipes, but I rarely use one. It’s all in my head.) I never thought about it that way, but I suppose they gained something out of it too, which helps me not feel too guilty about imposing on people’s time.

Finally, stored up in the back of my head are all these feelings of how much I want to show my appreciation to everyone who has helped recently. I have grandiose plans of cooking several sumptuous meals to express my thanks, and I hope that little by little my health will cooperate, and I can follow though on my intentions. So, thank you again to everyone who has offered help and support these past weeks. It has been tremendously comforting.

 

Water March 23, 2010

Filed under: Taoism — wenren @ 8:20 pm

I love swimming.

These days it is perhaps the one thing that is keeping me sane. The doctors and nurses (and my own previous experience with radiation) have forewarned that radiation will produce fatigue, and to combat fatigue, one needs to exercise. So swim I must. I have been really trying to make it a priority, and it makes me feel so good. I am happy about that. I don’t know what I would do if I could not swim anymore. I used to run — ALOT. I used to run races, I used to run a below 8 minute mile. I used to take running classes. I used to think about training for the NYC marathon. But no more, my body cannot take the trampling, and pounding of running. My lungs can’t take the harsh air, and the coughing. So, I am glad that a few years ago, I finally took the plunge (pun intended!!) and learned to swim properly.

I have never been afraid of water, but I could not really swim, nor did I have proper breathing technique. Now I can do all my strokes except for butterfly.

In the past, I would swim for a half and hour and mix it up between freestyle and calming down with breast and back. These days, I am taking it nice and easy with breast down one lane, and back down the other side. I throw in a couple of kickboard sessions to mix it up too — gotta get my legs in there. And there is nothing like gliding in the water. I sometimes think to myself that maybe because I am a water sign (Pisces) that the swimming was meant to be. But ultimately I know it’s the weightless feeling. Feeling like I am in another world, and feeling like I can let the cancer glide by me and wash through me.

I have been thinking more about this water imagery, which figures so prominently in Taoism. Water is yielding, yet powerful — years of water pounding can erode the densest rocks, and slowly knead hard rocks into soft buttery sand. I guess I want to be like the water with cancer. I want to be strong, but yielding because a strong harsh force is tiring, and not really my personality either. I see myself trying to weave and flow around the cancer, and yield to those parts that I cannot control.

 

Drugs and Fatigue March 22, 2010

Filed under: Becoming bald,Brain mets,Side Effects,Treatment — wenren @ 9:49 pm

The title pretty much sums up my radiation experience so far. Luckily I was able to get home from the hospital this past Friday night, and what a relief! Hospitals are the worst places to get peace and quiet and rest! Thanks to CH for her help with the radiation treatment scheduling — I guess it helps to play frisbee and know a resident in neurology. I will have to admit the virtues of frisbee just from that experience alone!

So treatment went okay on Thursday night in the hospital, but afterwards I had the worst pain in my neck and head, and could not fall asleep. After getting the nurse to give me several pain meds, I finally got a bit of relief, but it was a restless night. Then the following morning on Friday, I think the pain meds made me nauseous, so the nurse gave me more anti-nausea meds which make you drowsy. But this time, I was ready to crash and fall asleep but it was daytime, and my roommate had her family there and to my ears, they were chatting too loud. I was cranky, tired, and just spent. So being able to go home Friday was the best news of all!

Since I have been discharged, my radiation treatments will all be outpatient and mostly in the mornings. I have to go Monday through Friday for the rest of this week and three days next week. I have 10 treatment totals. I have done three so far, so seven more to go! The actual time of the radiation is very quick — maybe 3 minutes? But there is positioning and setup. So for positioning, the have to mark a spot right in the middle of the forehead that looks like something between a cross and a plus sign, so my husband has been joking that it is Chinese Greek Orthodox Easter. And why didn’t you get the memo about it?

For the radiation, I have to be on various drugs. The main one is decadron or steroids — which reduce swelling, but also make you hyper, agitated, stimulate your appetite, and make it difficult to sleep at night. Steroids are good but there is also the bad. Because they make you immunosuppressed and can have a bad effect on your stomach, I need to take antibiotics, and something for my stomach in the mornings. So, I never felt like I was taking so many drugs in my life until this recent experience. Today when I met with the radiation oncologist, I told him that I was having trouble sleeping so now I have ambien for that too! I am a regular pharmacy.

However, I am thankful that for the most part the pain has been better and I haven’t had to take any of the opioids (oxycodone, or hydromorphone.) Because that stuff backs you up, and knocks you out. I guess even though I have never taken opium, I know what it feels like.

The third main factor to radiation is fatigue, fatigue, fatigue. And having had radiation before, I know that fatigue feeling. And the best way to combat fatigue is to exercise, so I will do my best to keep up with the swimming. But of course, we you feel dead tired, the last thing you want to do is to get out an exercise.

Oh and one more thing, this radiation will make me lose my hair again (for the 4th time) — I don’t know I have lost count. But I suppose that is the least of my worries at this point, and I have a bunch of hats. It will be a drag to have to explain my appearance or deal with quizzical looks. I hate losing control over what part of my life I want to reveal. I am pretty open about talking about cancer, but I don’t like my personal stuff to “hang out” in the open so to speak.

Finally, I just want to thank everyone for the good thoughts, prayers, and well wishes! It has been very touching to get so much support mentally and physically. It has really helped us. I keep thinking that when all of this blows over, I am going to make a really yummy dinner for everyone who has helped us, but then stuff keeps happening. But just know if I could I would, and hopefully I will be able to do it soon!

 

Bad news. March 18, 2010

Filed under: Uncategorized — wenren @ 7:02 pm

I am back in the hospital, though I feel okay but it is easier to get things underway at the hospital. Basically the cancer has spread to my brain, or I have brain mets. It is treatable by radiation, and I will be getting 10 whole brain radiation treatments in which I have to come in every weekday for my treatments.

I am mentally exhausted from dealing with all this, and don’t feel positive about this cancer “journey.” I just feel angry, and resigned to the fact that cancer will slowly sap all the enjoyable positive things from my life. So, right now I feel like if cancer wants to take it all it can. I feel passively Taoist about it all (wu-wei — non-action — like the water, yielding, actually not quite passive, but going with the flow) and if the flow means having cancer everywhere in my body until it loses function, then I guess that is what it will be. I mean I am not denying any treatment, but treatment does not seem to be too effective right now.

 

Grateful March 11, 2010

Filed under: Thanks — wenren @ 9:53 pm

I am grateful that I am no longer in pain. I have more or less resumed my regular activity — meaning I can walk and breathe now without pain. I feel like I have just come out of some traumatic experience, though this morning I felt so tired and my right eyelid is swollen. I tried taking a little nap and lying down, but I just end up feeling restless. I keep waiting for things just to settle down and be boring and normal. Really my life does not need to be so interesting. I like boring. But something new keeps getting thrown my way, and today it is my puffy right eyelid. Anyway, I am hoping the eyelid thing will resolve, and that I will continue to feel good. The last few days I have been feeling more myself, and suddenly I had this sense of how life is not supposed to be so painful.

I want to thank all the people who helped during this difficult time. People who brought food over, people who helped watch our daughter. People who came just to say hi, and people who helped to figure out how people can help. We’re very lucky to have this kind of support, and I know I am lucky that somehow my body, my poor lungs survived this. I hope to get back to swimming freestyle soon, but one step at a time.

And everyday I count the days until I get my ultrasound to see if things are better in my liver. It’s like I am holding my breathe (so to speak) until March 17th. I am trying to hope for the best, but am prepared for disappointment too.

Oh, I am also grateful for the recent spring-like weather.