"You Look Great!"

Since this has happened to me, I wanted to share this link to a post entitled "Cancer made me beautiful" by Ann in Sacramento.

Several times a week, people say to me, "you look great!" or "You're looking good!". And, I thank them but I do wonder things like, "What? Do you expect me to be at death's door?" And, sometimes, "Well, maybe I look great but I'm tired as all-get-out. And, the swollen lymph nodes under my left armpit (or the lymphedema or healing fractured ribs on the right side) are painful."

It always surprises me because while I try to cultivate happiness by being mindful and aware of each moment, I'm not always happy (my family can attest to this). I worry about finances and I worry about whether or not I can do my job (expending energy teaching is a case in point).

I imagine it's hard for people to figure out exactly what to say to me - this was something my therapist and I talked about last week. There are times when I want people to treat me normally - and I expect myself to try to live life as "normally" as possible. I want to be normal. I don't want to admit that I have limitations to my activities because of cancer. That pisses me off.

On the other hand, I have to be realistic and so I have to communicate to my volleyball teammates that I don't think I can play at the moment - and I feel like I have to make a case to prove to them why I can't. I have to ask my chair to give me sick leave so that I won't have the weekly energy drain that teaching brings - and again, I have to "prove" that I'm "sick enough" or "tired enough" to justify taking the sick leave.

I imagine sometimes that my friends and colleagues don't know what to do because my asking for sick leave (or whatever) runs counter to the way I look and to the way I want to be treated because I want to be normal. So, then I get pissed because I don't think people believe me because I "look great" - if I "look great", I must be a charlatan to want sick leave. So, while I look and act normal most days, I really do need these special concessions and I don't want people to second-guess me.

To get back to Ann's post, she says that she likes it when people tell her she's beautiful. I guess I do, too. It means that my efforts to live life in the moment and to cultivate happiness are working. But I really do need to take some sick leave (not all the time, but after treatments) and take care of myself. I'm not sure that that helps people with the dilemma of how to interact with me . . . but maybe this helps people understand me more.

Trying not to read anything into the number . . . and a cancer rant

I got the results of my CEA today - the CA15-3 won't be ready until tomorrow because they have to send it out. At any rate, the CEA was 1.9. Anything less than 3.8 is considered normal.

However, even when the cancer was at its worst last February 2008, when we discovered the skin and bone mets, my CEA was still only 1.2 (that was in January). It never got higher than 1.2 until this March 2009, when it was 1.4, then last month, it was 1.6. It's creeping up a little bit.

From what I've read, the jury's out as to whether or not the CEA is a good measure of cancer activity; it works better for some patients than it does for others. The CA15-3 is considered to be more sensitive.

I'll get the CA15-3 results tomorrow, which may be a more reliable measure. I've been distracted all day because it's higher - didn't really feel like teaching today, but I had to. It was good to teach though - got my mind on other things. But it certainly has affected my mood today. I guess it doesn't help that I'm tired today - stayed up past 11pm working on a grant proposal and watching TV. I did, however, get a good 3 1/2 hours sleep before waking, then got another 1 1/2, then another 1 1/2, so it was okay - just not long enough.

Need to get to bed at a more decent hour, shortly after Idol is over. Until then, I need to: grade three sets of papers and edit my little grant proposal. Oh, and balance the ol' checkbook. Laundry's washing, so that tomorrow, all I have to do is pack.

Remind me not to travel during classes. It always seems to add more work. I'm feeling a little overwhelmed today between housework and grading papers, wishing I could put off the Norway trip until June. On the other hand ... if the tumor markers are up, that might mean changing my treatment regimen and I might not be able to .. .

Okay, got to stop that negative thinking .. .

The Cheeky Librarian today posted a link to someone's cancer rant . .. she made a lot of good points (I assume it's a she, but they're not sure who the author is) and it sorta fits my mood, so I'm posting the link here:



UPDATE: I found a site that discusses the CEA ... I feel a bit better after reading that. A rising CEA can also be caused by an infection, which fits what I think might be going on with those lung spots. I still have that slight cough. But . . . some nagging doubt still remains.

Think positive thoughts, right?

What I Need Right Now

Several people have asked me how they can help. A lot say, "just call and we'll be there for you". Well, in truth, it is hard for me to call right now to ask for help. It's all I can do right now to maintain daily life - taking care of my son, going to radiation and other appointments. When I do have time, I'm feeling angry or sad or alone. I'm trying to keep up my spirits. But it's hard and I need daily reminders, not just from myself, but from others, that I need to focus on what I'm thankful for - for what I do have and not on what I don't have.

So, my request is this: please call or email me. Invite me to coffee or for a walk or a hike or take me out to dinner. Offer to bring me over dinner.

I am having a hard time right now. I'm trying to come out of it and there are a lot of people who are trying to help me do just that. But, please, don't make me do the work of initiating contact. I appreciate it if you all initiate it - it takes me less energy to respond than to call you. I'm afraid of bothering you, you see, because I know that you all have your own issues. One of my friends may be losing his job; another has a troubled son; another has a mother who is getting more and more frail and a difficult sister; my family has their issues; another has a troubled daughter; another is facing bankruptcy. I don't want to bother you when I know you're dealing with all of that stuff because it makes me feel bad that I'm taking you away from what you need to deal with. And, I don't know when you are able to take on my stuff on top of it. That's why it's easier if you initiate the contact. I would appreciate it very much. Love, Dee

Today's Article in the Corvallis Gazette-Times

Today, the local newspaper, known as the "G-T", published an article about this very blog. The link to it is:

http://www.gtconnect.com/articles/2008/03/11/news/top_story/6aaa01_kingston.txt

I'm not that thrilled about the picture of me, though. They didn't get my good side! LOL. It's okay, though. What can you do?

The other thing I might ask people who read the blog is to this: If you know my son, please don't tell him anything negative about cancer! He knows that I have a disease called cancer, that because of it, they had to take my boobs and also that I have to take this medicine that makes me tired and sometimes sick. It is not going to kill me. He doesn't need to be scared about that. By all accounts, even with these metastases and even if I do end up taking some form of medication for the rest of my life, I do have many years left in me. Better yet, it might be better if you didn't say anything at all. He knows what he needs to know. Thank you. I appreciate that.

And, remember, keep your tears and fears to yourself. Feel free to make me laugh, though! Thank you.

Tears, Fears, and Radiation

Okay, okay, that was a bad replacement for "Planes, Trains, and Automobiles", but you've got to give me brownie points for trying!

The other day, I noticed that some friends of mine seemed to want to avoid talking to me about the news that the surgeons didn't get all the cancer. Of course, I can't read their minds, but I can only guess that they weren't sure what to say or what to do to help me and just maybe, maybe, they didn't want to see me burst into tears. I am still pretty emotional but as my boyfriend, my counselor, and several of my colleagues have reminded me: it's okay to cry and if you're uncomfortable with it, then that's your problem and not mine. It's better for me, healthwise, to let it all out. So, be warned . . . I am trying to gain my equilibrium and there are times when I don't cry. But I still do sometimes and it's okay. I'm really doing okay, the tears just need to come out sometime, okay?

I also want everyone to know that I want to talk about the whole thing - treatment options, how I'm feeling, etc. Please, please don't feel like you have to walk on eggshells around me. If I break into tears, it's only for a moment and then I'm able to talk about what's going on pretty calmly and logically. It takes more energy for me to introduce the topic, so I really really appreciate it if you ask me questions. I welcome them and I want to talk about it. So, in terms of what to say, ask me how I'm doing and what's going to happen next and also tell me a good joke! I do need to laugh. In terms of what to do: hugs are appreciated. I'm still able to function with all the daily mundane things to do (that is, except for cook my own dinner!); if and when I can't, I will ask you for help. Regarding dinner - at least two or three nights a week, my son is with his dad, so meeting somewhere for dinner is always a good something to do.

I mentioned Jeanne Sather's blog, entitled "The Assertive Cancer Patient". Again, the address is:

http://www.assertivepatient.com/

I bring up her blog because there have been several times that Jeanne has stated that she's learned to stay away from certain people for her own mental health. The two categories I remember that she mentions are: 1) those who are afraid she's going to die; and 2) those who are still dealing with their own fears of cancer. As you can imagine, those who fall into either of these categories have the net effect of 1) depressing the cancer patient, which then 2) takes away any positive energy that patient may have. I want to add a third category, 3) for those of us who are older siblings or are the take-charge type, people who bring to us their own fears of death and/or cancer make us want to take care of you rather than allow you to take care of us. We need you to take care of us. As my counselor mentioned earlier today, if you come to me in tears because of your own fears of death or cancer, take your tears to your own support system, and then approach me positively and with strength. I don't have energy for you otherwise and I might just learn to ask you to go somewhere else.

Okay, now on to the radiation. I just spoke with the radiation oncologist. The plan right now is to go on Xeloda and Tykerb (if insurance allows) and in about a month, we'll assess how effective they are. If they've proven to shrink the red "sheet" of cancer, then we start radiation. I'll have radiation for 6 1/2 weeks. In the meantime, I stop the tissue expansion as it's easier to radiate with less expansion. A month or so after radiation stops, then we can go back to expanding my tissue. That's about 3 to 3 1/2 months from now. I think I have at least two more expansions to get to a "B" cup. Then, it's a few weeks after that to get the permanent implants. So, I'm at least five months away from getting the permanent implants. When you see me during that time period, I will still be relatively small and lopsided! Just so you're warned . . .

Again, TO HELL WITH CANCER! And, thank you to all my colleagues who were gracious enough today to chat with me in the hall or in my office and ask me questions and give me hugs and allow me to cry in front of them. It's really wonderful to have such supportive colleagues! Love to you all.