what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Thursday, July 21, 2005

Remission

The first time I ever heard that word applied to me was just yesterday. Dan called my oncologist to ask if he thought he (Dan) might be able to return to work since I'm feeling so much better. The doc said, sure, she's in remission now and you should enjoy it for as long as you can. Dan will go back to work sometime soon, maybe even next week.

I really only thought the word remission was used by doctors when all signs of cancer were gone, but based on how the oncologist is using, it applies when a patient has a dramatic response to treatment and the cancer has receded by quite a bit, since this is what mine has done. I will have another CT scan in about two months unless I become sick and/or symptomatic that cancer has started growing again. And the doc said I will have this treatment for at least 6 months before we review whether I can stop, unless I stop tolerating the treatment (e.g, liver problems develop or some other unpleasant side effect starts bothering me).

I had another chemo treatment yesterday and I feel ok today... just tired but not sick. I'm grateful to not feel nauseated because that effects everything I try to do--eat, sleep, entertain myself. It is a big gift to be free of that feeling.

I was reading my old blog entries and I realized I haven't written much about Dan and how well he has taken care of me since I got sick. He has been very supportive and has taken over literally every household job and chore, along with 99% of all baby care for Jennifer. I'm feeling better now so I wish he would let me do a little more but he is really against it until I am completely healed and free of all cancer. I told him that may never happen but he really feels strongly about it.

I think he doesn't realize how unique he is in the world of husbands. Lots of marriages end when a catastrophic illness effects one of the spouses. Especially when the illness disfigures one of the spouses so dramatically, the way mine has. After all, I 've lost a breast, lost my hair twice and had some rather dramatic weight loss that makes my figure look completely different. He just can't imagine how someone's husband just wouldn't step up to the plate and take care of things.

I really worry that I'm not taking care of him the way he needs to be taken care of. Romantically, our marriage has really suffered during my illness, and its very noticeable to both of us since we used to be so connected when it came to that.

Dan feels like my illness has put him and us into a holding pattern. I don't really feel that way because I can't afford to do that. I just have to keep going and trying to do the things I like to do or things I feel compelled to do before I die. I wish Dan would do the same, at least as far as professional ambitions. He really wants to change jobs and I've done my best to encourage him to do that even though I still have a lot of treatment ahead. He needs to be happy with how he spends his day, and since most of us work 8hrs or more each day, I think its crucial for people to find work that is satisfying, at least to some degree. I know we'd be able to work out whatever situation we had if his new job required an odd schedule. Dan is interested in going back to being a Federal Firefighter and that schedule would be a challenge for us but I think we could work it out. With firefighting, the schedule is very condensed but it would leave him about 14 days each month where he wasn't working. When he was working, the shifts would be 24hrs long, with some days worked consecutively. That would mean that I would have to take care of the girls on my own some days but I think I'm feeling good enough to do that. I just don't know how I convince Dan that he needs to pursue any and all jobs that look interesting to him and then let us worry about how to make it work. I don't want to be the one that holds him back--that equals resentment in a marriage, something we could surely do with less of, given all the other things that Dan sacrifices to help me while I'm dealing with a chronic illness like breast cancer.

Thursday, July 14, 2005

At last

When you wait and wait (and wait and wait and wait) to hear someone give you some good news, how does it feel to finally get it?

Great.

I had a CT scan today and the image tells a story about how things are going inside my chest. The story says cancer is now losing and chemo is winning. I have had significant improvement in my lungs, with the cancer receding dramatically on both sides. Even the fluid that has plagued my lungs and hindered my breathing since February has reduced in amount.

The winning combination is thanks to two drugs: Avastin and Taxol. Taxol made my hair fall out again (happened last week and is no easier the second time) but if it kills all the cancer then I happily concede each hair follicle in order to save my life and give me more time with my family.

Will it totally kill all the cancer? I don't know and I don't think anyone can tell me. Cancer is one of those illnesses that can go away and come back pretty much whenever it wants. That's why people use the term living with cancer. It sucks, but I guess I'd rather live with it than not live at all.

I don't know how many treatments I'll have. My guess is, I'll be treated until I am NED (no evidence of disease) and then for a little while past that. Or, I could be on treatment indefinitely, if that's how my cancer needs to be managed. The drug Avastin is so new that I would imagine doctors are still learning how to use it to it's full potential. Some chemo drugs have a lifetime maximum of how much a patient can take but I don't think either of these fall under that category. Lots of questions to ask the oncologist.

In other news, I gave the first part of my deposition for my malpractice lawsuit--that entailed answering questions from my lawyer so we could tell my story in my words. My lawyer said I did really well--I guess you can say too much, too little or you can say it wrong somehow. After the questions were over, I felt like I had been beaten with a lead pipe because it was so emotional to answer everything and tell the story. Part II will be the other lawyers asking me their questions. My lawyer said to expect that they will try to turn it around so that it sounds like I am to blame for the delay in misdiagnosis. Can you believe that? Just cross your fingers that this is over soon and I come away with having made those doctors know they were at fault for my current state--a more accurate and quick diagnosis would have saved me months if not years of treatment. Those doctors should either stop practicing or rethink how they practice. The other thing I'm hoping for is some sort of settlement so that I don't have to worry so much about money. If cancer is going to be hanging over my head for a lifetime, then I need to be prepared financially for a lifetime of medical expenses. Not to mention that if I can't return to work, something needs to take the place of my salary.

Thank you to everyone who is saying prayers on my behalf. Keep 'em coming. Namaste.

Saturday, July 02, 2005

Catching my breath

Yes, literally.

I really don't even know when I last posted or what I wrote. I had some time in the hospital because of an infection, fever and shortness of breath a while back and I can't remember if I logged in since to write it all up. I'll have to check later.

Funny thing about that hospital visit. I'd been feeling crummier each day leading up to it but it gets so hard to tell when you have the crap kicked out of you from chemo all the time. The regular questions get harder to answer. Am I tired? Fatigued? Short of breath? No appetite? Weight loss? Sleeping poorly? Well...yeah, for like the last year. I think the main thing this time was the fever of 102.8 that set it apart.

I had to come home with oxygen tanks and a pain pump (pca pump). I think I'm pretty much done with the extra oxygen now, I believe the antibiotics healed the infection and my lungs got back their reserve because I can walk up our stairs and not get winded and that's on my own steam, not the oxygen.

I think Veronica gets pretty scared when I come home with more stuff attached to me. The new chemo includes the evil yet necessary decadron which is a drug I respond badly to from an emotional standpoint. In other words, it makes me soooooo depressed. I just cry. No reason, no warning. I suggested to the onco that I try out Zoloft to see if it will counter that, at least somewhat. I've only been on Zolo for a few days, surely not enough for it to have gotten the upper hand. The good news is that decadron is only in my system for about three days because of chemo and as of yesterday, I could feel it leaving me.

My dad, stepmom and sister have all been here in San Diego to help out me and my family. Each has helped wonderfully in their own way--another blog entry for when I have more energy. In this same space/time, my mom (she likes to call herself The Birth Mother now) invited herself out and sort of bumped dad, stepmom and sis out of place, which was disruptive but unavoidable without a huge confrontation. I guess that's how my mom plans to do things now, the slash and burn method? Maybe next time I'll be stronger and call her bluff and just say what I really wanted to say...don't come out please, you don't make me feel better. I already have people here who are taking care of me the way I need.

My friend Judy was in San Diego for a little bit of business (www.strollerstrides.com) and she built in some time for visiting so I got to see her for the last two days. she is part of a Navy family and now has to move about every two years but I knew her first when we were just single girls having fun in San Diego. She, her husband and beautiful little daughters live in Jacksonville FL right now. Judy is such a good person, and seeing her really lifted my spirits. She brought me pictures of our single girl times together (Mayor's Midnight Run Marathon 1998 and so on), she walked with me, hugged me when I cried for no reason, and today brought me a cute outfit to go with some shoes that my sister bought for me a month or so ago. I wished Judy still lived here... she's the kind of person you always want on your team if you know hard times are ahead.

I still have my hair and I don't know why. I've had two weeks of chemo and I think it ought to be falling out. I'll have to research Taxol given in this way, maybe it just takes longer for the hair to fall out. The onco and nurses seemed sure my hair was not going to stay. I'll miss it.