Tangled in red tape

I have reached a crossroads and am trying to decide what to do. I have been on my current chemo (Xeloda) since June '04. My insurance, (a Medicaid supplement) does not cover it and tell me they will not cover it anytime soon. The drug company has on their web-site that it is covered by Medicare. Up to now the drug company has been providing me with the drug, but are asking me to reapply for the program. I have to prove that I am not eligible for Medicaid. (my social security check alone puts me out of range for that). This means I have to try to explain to those folks all I want is a rejection letter . Add that the drug company defines income differently than medicaid, so the numbers are different. I almost want to go to plain old Medicare. I am also considering just stopping taking it.
The good side though... The side effects are really mild, aside from the fatigue and the sensitive gut. It also has wiped out one lymph node site. I have 3 bone sites, 2 are now "stable" meaning they are there but not growing. I am just tired of being tired.

No word still about approval for physical therapy, which is suppose to help with pain and might help he fatigue a bit.
I put this blog up to give others hope. Today I sound so negative. It will pass. It is only paperwork. I just get tired thinking about it.
Peace,
Lisa

Staying busy

Been awhile since I posted, been quite busy. Sunday was our local Komen race. DJ and I got separated early on, but I still had fun and came home with a ton of stuff. BTW I don't run, or even walk cuz of the lack of stamina.
Stamina is a big issue, this week is fall break. DJ is a teacher and is turning 40 this weekand is bi-polar. I have a hard enough time keeping up when I sleep a bit during school hours, This week already has me exhausted. (fortunately it is my off week with chemo.) We are cooking dinner for friends Thursday, spending Friday morning at The Wellness Community, (clay class is my favorite!!) , going out Friday night. I also have phone calls to make about church committees, call Ohio again to try to figure out why my Mom still does not have a grave marker after almost a year, and get my blood draw to start back on chemo.
Pray that i survive this week :)
Lisa

That time of year

It's "that time of year" once again. Breast cancer awareness month. I personally do not need anyone to remind me that breast cancer is out there. It's in here too. In my chest and my back, I cannot move most days without acknowledging it's presence.

My feelings are very mixed. I have several friends with other cancers who resent that we get a month, a ribbon, and once a year a whole lot of attention. I must admit that I am grateful to have a cancer that does get the research and funding. I know that I am alive because of that.
What bugs me is the manufacturers who try to make money off my disease. Slap a pink ribbon on it and tap a whole new market. I know there are those like Avon and Yoplait who give fortunes to the cause. Those at least put the money where the ribbon is. I am more wary of those who put the ribbon on their product and then are very vague as to why. Some will say a"a portion goes to the cause . Some are not even that specific. Some specify the exact cause, some say "breast cancer awareness" which I guess could just be that ribbon they slapped on. These days I read the fine print before I buy something just because it wears a pink ribbon.

My other pet peeve this time of year are the talk shows and news bits that get more wrong than right. They say things like "Mamograms prevent cancer", Come on folks learn the difference of basic words.. Prevention. Detection. Both important, but different. Or worse are those right winged folks who say that "abortion causes it". I never had an abortion, and know few breast cancer patients who did.

I do support some products because they support the cause. I do wear several different shirts with the pink ribbon (I also have one that says "CANCER SUCKS"). But for now I will avoid the socks, notepads, and candy that wear the ribbon because it is the thing to do. Instead I will DO something. I will walk, answer phones and write what checks I can. I will share my story.

Peace,
Lisa

Adventures in Babysitting

It has been way too long since I posted. First I had problems with my server, then we spent a three day weekend babysitting a friend's kids. Between the kids active schedule and Dj's trouble sleeping with cats in the house, I slept most of yesterday recovering.
They have 4 kids, (five actually, but he oldest moved out.) The ones we were with were 10, 13, 15, and 16. They really are basically good kids. They mostly just needed someone to be accountable to. There were still problems with that. I must look stupid or gullible, the things thought they could get away with. Then again I think they did get away with some things... Like does it take 3 hours to mow the neighbors postage stamp yard?(the 13 yr old). Did you think I wouldn't check to see what time that youth group meeting really got out at? (the 16 yr old sneaking over to visit his girlfriend). I guess the biggest moment was when the 10 year old claimed no one ever told her not to put foil in the microwave. Not only did she do it, but walked away as it arced and the foil, paper plate, and wings ignited. Boy was that kid scared to show me what happened.
I am so tired from trying to second guess them all the time. Are all kids this age like this? No wonder I am not a parent. We thought about foster/adoption programs, now I am giving it second thoughts.

I am waiting for a call from the doc's office that my referral for physical therapy has gone through. I really want to try it as a way to help manage my pain. The podiatrist says the new pain in my foot and ankle has nothing to do with the bone spur. (This is my right side, my usual pain is left hip and sciatica all the way down from the tumor on my sacrum) She says it is the tumor on my L5 and I should do pilates. While I know pilates could be good for me, I think physical therapy should come first. Hopefully they can help me with "is it helpful to me or not to use the cane or not?", (GP say yes, podiatrist says no).

Hope everyone is well. I plan to post links to other blogs as soon as I figure out how. Look for future post about pink ribbons, aging parents and The Wellness Community. I need to go get a little food on my belly so I can take my Xeloda. Then it's probally a nap .Peace and blessings,
Lisa

Coping

I want to thank those who have shared their comments, have not learned the "correct" way to do that. I plan to try to put up some links in the near future, as soon as I figure out how to do that.

The pain is getting back to a bearable level again. That is one lesson I wish would stick!! It did remind me to try to share some of what I have learned. In this case, methods for dealing with pain when drugs don't work (or we stop working the drugs).

1. I sleep, sometimes a lot
2. distraction, find something to absorb your attention. A movie or book always work for me.
3. Play with my puppy. I have the sweetest little Yorkie named Buster. When I am down he either just cuddles up until I feel better or brings me his favorite toy and said, "here, this always cheers me up"
4. Do something for someone else. I try to volunteer in the community. My oncologist for some reason nixed the idea of my working at the shelter for the Katrina evacuees, something about chemo and risk of infection. I do try to help out at my local Wellness Community. (A place I would recommend to anyone dealing with cancer).
5. Have a faith, and hopefully a community to share that with.
6. Know my limits. That means somedays I go back to using a cane, sometimes I have to find a place to sit, and sometimes I have to say "no".
7. Count my blessings. With all that is going on with things like hurricanes and tsunamis, and hearing of others loosing this fight with cancer, I realize that I really don't have it so bad.

Not sure if those help anyone else, but I know that I need to remind myself of them sometimes.

Peace and blessings,

Lisa

Fumbling Along
Looked at my post from yesterday comparing it to others that I have seen and see that I have a long way to go.
Today is a not so great day. You would think that I could learn some simple, basic things, but no. I am doomed to repeat the same mistake over and over. For weeks I have been screaming from the rooftops how much better I have been feeling. The tumor on my back that was causing pain, sciatica, numbness... The one that made me use a cane, limp, and have difficulty sitting, standing, walking... It had stopped hurting!! So stupid me stopped taking my pain medicine. I am on a daily dose of time-release morphine. Enough that could do serious damage to those not dealing with cancer in the bones of the lower back. What I forget is that I take it daily to PREVENT the pain. It was working...
Oh well, other good news is its cooling off around here, dropping down to the mid 90's. I am on my break week with the chemo. The chemo is a pill, take it for 14 days, off for 7. Been at this one since 6/04. The last couple of days taking it I am exhausted, so I need this week off to rebound.
I started this blog to share my wisdom and positive attitude. When I find them again I will be sure to share:)
Peace,
Lisa

A little history
While exploring the world of Blogs I have seen many expressing what life with breast cancer is like. My story differs only in that I have been living with it for a bit longer than most. I was originally diagnosed 8/99. After lumpectomy, chemo (cmf) and radiation, I was given a clean bill of health and was told that I had a 98% chance of never seeing cancer again. That was on 3/00. 4/01 I was diagnosed with mets to the sternum. It has since spread to my spine and sacrum . I have had chemo a total of 6 times, (the current course has been 15 months and still going), radiation 3 times.
So many people think that if the cancer comes back then its time to plan the funeral. I am here to say that is not the case. Life goes on. It might be different. Hell, in some ways it is better than ever!
Lots more to share, but will have to continue later.
Peace,
Lisa