Ca27.29 climbing, but is that significant?

Doctor's appointment went fine last Wednesday, he said that my immediate blood tests were good, all back within the normal range. But then today I got back my Ca27.29 results and the numbers once again are climbing. They went from being 99 in May, to 76, 45, then up to 54 and the latest was 68. 68 is still relatively low, I've heard of people with active disease having numbers in the 1000s. Doc said that he'd be more concerned if it was at least doubling over several months- so I shouldn't worry. Well that's easy for you to say.

I hate the fact that I've taken such good care of my body and it has betrayed me. I really really really get annoyed with how society thinks (and I did too) that if you exercise & eat right you won't get cancer. People mistake "healthy" with being physically fit- which is not at all the same thing. Being physically fit does NOT prevent you from getting the flu, or a cold or EVEN CANCER! Besides physical fitness is superficial, and who is to say that they know what is going on inside their bodies by looking at the exterior. I know quite a few women that are very physically fit and they still got cancer. All the craze with exercising, eating vegan or organic foods is lulling society into a false sense of security. It makes you believe that if you do these things you can control your body. WRONG. Just look at the little children who get leukemia or diabetes- is it because they didn't exercise or because their parents didn't serve them organic foods? It is not.

Just like we have no control over which genes are turned on or off in every cell in our body- we can't prevent bad things from happening to seemingly "healthy" people. The bottom line is we are all dying from some chronic disease, just most of us don't know it yet. And there are the occasional individuals that live into their 90s- why, you ask. They are just freaking lucky.

House pictures

Doctor appointment tomorrow, will get blood work and hopefully can schedule a stress test for my heart. I've been concerned about chest pains lately, which sort of radiate throughout my shoulders when I exercise. Its pretty intense, I get short of breath and feel faint. Its probably because I'm so out of shape, but heart disease does run in the family and with all the chemo drugs I've been on I just want the reassurance that I don't have a heart condition. Then once I have that confidence, I'll be back to pushing myself and feel okay when I feel "the burn".

Finally have pictures of the house going up. These are from day 2 and day 3. Super excited. Also wanted to pass along that I, and a bunch of people from my mom's group will be walking the 1 mile Especially for You walk at Mercy Hospital on October 2nd.

And lastly for all you immunology researchers out there- I just met (online) a gal who is going to join a clinical trial for metastatic breast cancer, where they will prime her own Dendritic cells against the Her-2 protein and then reinfuse them into her. I was super excited to see that some of the work we do at the lab bench does translate back to patients- and I feel so proud to have been a part of that. The trial is out East, so I won't be joining the study, but I can't wait to hear the results. Oh and one more fun fact- if your looking for the next grant/fellowship to write, consider metastatic breast cancer. The vast majority of breast cancer research is directed at the initial treatment and/or the etiology of the disease. Very little actually focuses on the metastatic disease which accounts for all breast cancer deaths. So its a under-researched area, FYI.

House updates

We've broken ground! Our address will be 200 Colton Drive, North Liberty. Contract says we should be in by Dec 16th- what a great early Christmas present.

Other than that, I am feeling good. I had a big scare when I noticed new pains around my incision sites and in my ribs on that side. Went to the Radiation Oncologist and she said that it didn't feel like a new recurrence. A new recurrence should hurt with deep breaths and these do not. So with that vote of confidence I've gotten hopeful once again for a normal life. Every good day, I get hopeful for "a cure", and then I get all excited about the prospect of another baby. I then have to remind myself just to be thankful, and not push it. This cycle repeats itself every few days.

And in reality I could stop my treatments when ever I wanted and try to conceive. But the issue would be that if my cancer started growing again or spread to more sites, I would not be able to receive chemo while pregnant. In addition, whole body imaging to monitor for cancer growth is dangerous to the unborn baby- it is a large dose of radiation. While I was in the hospital for my cellulitis infection- the nurse told me of a patient whose cancer recurred while pregnant, she refused chemo- as it would kill the baby. And although she was able to bring the baby to term, her brain was so full of metastases by that time that she died within a few weeks of her C-section. Obviously, I would hate to abort a child but not being there for Parker and Patrick would be worse. So I think I will avoid ever having to make that decision.

But at least we have options, perhaps we could adopt or use a surrogate. Of course all this depends on whether I can get to "no evidence of disease" (NED) stage, or in my doctor's words, a homerun. So one thing at a time and one day at a time. But in the meantime, I still plan to dream of a totally normal life.

Also just celebrated (if you can say that) my 1 year caniversary of the original diagnosis. What a hellish year- grandma dies, mother dies, dx cancer, cancer recurs before treatment even ends. I like to think that no year could ever be worse that this one, so I must have some good years ahead. :)

Second Guessing

Well despite the good doctor's appointment, my ca27.29 number was up from 45 to 54. 9 points- do I really believe that is significant? Especially when the liver enzymes were good (?) I spent at least 1 whole day sure my cancer was spreading while on vacation. My back hurt, of course this was after waterskiing, but I still thought it was cancer. Then I came down with the stomach flu- up all night in the bathroom. So I was all worried the cancer was in my liver or something and making me sick. Parker got the same bug 2 days later, so the worry that it was liver cancer or something has subsided.

But I still worry. There are a few spots on my chest that are painful to the touch- granted these were surgery and radiation sites so maybe its just tissue inflammation. Dr. still plans to stay the course on the Xeloda and Tykerb, we will get a scan in a few months. And his nurse said that in some women the numbers can fluctuate a bit and they can be up one month and down the next. Sounded like as long as they don't stay in a constant upward climb- we're good. Fingers crossed. Meeting with the radiation oncologist this week- hopeful that she says the pain to the radiation sites is normal.

Cancer is not like any other disease- it is so unpredictable. What works for one person may not work for the next person.

Everything is quiet for now

Great doctor's appointment yesterday. Blood work was looking better, liver enzymes getting closer to normal, and in a few days we'll have the results of the ca27.29 blood test. Doc said that in 2-3 months we'll repeat the PET scan and see how the bone mets have responded. I'm trying not to get my hopes up.... but things are looking really positive. I discussed with him the idea of oligometastases and he said we won't know if that's my situation for 5-10 years. I'm embracing this notion because it suggests that metastasis proceeds in a step wise fashion so that it can be caught or stopped at intermediate stages before it become systemic and more difficult to treat.

I'm also excited because he said that down the road, if I can stay NED, we can drop one of the drugs and maybe even someday (years down the road), I could even drop the other one. I'd be totally off chemo!!!! This has my heart pounding really hard because it could mean a normal life again and maybe even a second child! Don't get me wrong, life right now is really great and my side effects are not a big deal at all (right now). But for the meantime, I'm not pushing my luck and I'm just so thankful to be here and more or less healthy.

Interestingly the doctor even said that he'd like me to "get a job", I was totally confused. Apparently he thinks that it'd be healthy for me to interact with some adults in a professional manner outside the home. He really wants me to get back to as close to normal as possible. Well, little does he know that I'd don't want the old normal.... I want a new and improved normal. Plus I really love being home, I'm super crafty and love coming up with new projects and activities with Parker. Plus I do get out and socialize with other moms.

We're headed for vacation on Friday. One whole week of R and R at Lake Redstone in WI with some of our friends. Can't wait- doc even gave me his blessing to do some waterskiing and yes have a couple beers! Heee heee

Loving LIFE!

Another cycle down! Kristin-1, Cancer-0

Just finished another cycle of Xeloda and so far my hands and feet are not sore! Maybe it is the fact that I didn't spend alot of time on them, or maybe the slightly lower dose has helped. Either way it is a major victory for me and my quality of life. Although they don't hurt, I have never seen my feet peel like they are now. Another major break-through, turns out I have become lactose intolerant, so cutting milk out of my diet has dramatically helped with my GI issues. So no ice cream for now, but its worth it.
On another note, my hair will be due for a trim soon! And it is finally long enough for a clip or bobby pin. In other news, our house plans are coming along, working on a lot of paperwork this week, and then we're taking a week off to spend some time with friends at my Dad's cabin on the lake in WI. Family is good, Parker is now running and climbing- yikes. Thanks for all your well wishes and please send me your updates sometime.

I love you Ca 27.29!

Great news- the Tykerb rash and the Hand/Foot syndrome is all cleared up for this cycle, hello 2 weeks of feeling great!!! On another note, just got the numbers back for my blood work, and sorry to say.... ummm... Mr. Cancer.....you are dying. What started out at 99, then 76 is now a tiny little 45! Normal is considered under 40, but don't get too excited yet, I will be on these drugs for a long time yet. My alk. phosphatase levels are looking better now too, which would back up the decrease in Ca 27.29. Oddly, my eosinophils are elevated- not sure what's up with that, maybe related to the rash??
Doctor's appointment today, sore throat, probably thrush from all the chemo drugs. Good times ahead!