No treatment this week

Dr. K decided that since we're going to be leaving for vacation following my scheduled May 16 treatment, it would be best to take an extra week now to get my counts back up and then do two treatments in a row as planned. So, I have this Friday off, too, and then I'll have treatment on May 9 and 16 as previously scheduled.

I've been trying to get more gardening work done, but I have to admit that I certainly don't have the stamina I used to have. I can see some improvements out there, though, so at least I know I'm making some headway. We had a frost warning last night, so I covered my new tender plants with old t-shirts to protect them and so far, so good. Now if I can just keep the squirrels out of my pots!!!

I'll check back in a few days.

The bra still works, but no chemo this week

There was a replacement receptionist in the chemo area this morning, so I had to go in after waiting 30 minutes for my blood draw to find out what was going on. Thank goodness it hadn't gotten busy yet and a nurse was still available. After a little dance, some deep breathing, and a slight needle adjustment by Karen, my chemo nurse, we got a great blood draw. Out to the waiting room I went to while away the usual 30-40 minutes while my blood is tested. After I had been waiting an hour, I went back in to find out what was going on. Long story short, the receptionist failed to inform me that my labs needed to be reviewed by Dr. K because my ANCs were below 1.0 (they were 0.9). This was what I feared would happen since they don't bounce back as much during my week off, and last week they were 2.5 before treatment.

After a total of 90 minutes of waiting, I was told my treatment was cancelled and to contact Dr. K's office next week. I don't know at this point whether she is going to have me come in on Friday to do bloodwork, see if I "pass" and then give me a treatment, or if she will give me two weeks off to recover and then do my remaining cycle prior to vacation. I will let you know as soon as I find out.

The ANCs are important because they are, in Karen the chemo nurse's terminology, the baby white cells. They are an indicator of where my white cell count would be in five days. Usually the limit set by oncologists is either 1.5 or 1.2. Dr. K set it at 1.0 (I don't know if that's for me or all LMS patients on Gemcitabine). If I had treatment, my ANCs would drop even further, leaving me highly susceptible to infection and every illness within five miles. Okay, maybe not five miles, but I would have to be very careful not to catch anything because I wouldn't have enough white cells to fight off the infection.

So, it was the right call on Dr. K's part, but I'm disappointed because I expected to have the second cycle done and was anticipating the usual quiet weekend and having next Friday off. On the other hand, since I'm tired but not as tired as I would be following treatment, I've been doing some more work in the garden before the rain and cooler weather arrives tomorrow. It feels good to be out there again. I'm also planning to have pizza tonight, which we haven't had in a while.

Another lesson learned: When an opportunity presents itself, seize it! Have a great weekend!

My lucky bra

I don't know if it's the bra or if it's the dance I've been doing before the nurse starts the IV, but two treatments in a row there have been no problems with the blood draw. I know you're wondering, "What does a bra have to do with it?" but I was thinking one morning that it's possible my bra was moving my port, which is located on my chest just above my right breast. Those Victoria Secret bras can make some terrific temporary breast improvements, but in my case, maybe the improvement was a little too terrific. Anyway, I've been donning a less "agressive" bra and things seem to be flowing well. Anything that works to avoid needle sticks!

(You never know what you're going to read on here, do you?)

Ed managed to get to his swap meet Friday afternoon and Saturday and found lots of bargains, while Mom kept me company. We chatted and watched a lot of the "Food Network," my favorite channel. Even when I'm nauseous, I still enjoy watching food, watching people cook food, watching people eat food, and watching people talk about food. Does anyone else have this borderline obsession?

My blood counts recovered over the week I was off treatment, but as has happened in the past, they never return to the previous highs. I'm not certain what is going to happen this Friday with my baby white cells (ANC as it's listed on the report). Keep your fingers crossed that they are 1.1 or higher, because I'll have to skip a treatment if they are 1.0 or lower. I'll let you know what happens.

I continue to work on our plans for our upcoming European vacation. My travel agent informs me our cruise documents are in, but we can't do the document dance (not to be confused with the blood draw dance) until the documents are actually in our hands. For those who haven't cruised before, I'll explain the significance of the dance: Having your travel documentation in your hands (usually a booklet that contains the cruise contract telling you everything you can't do or bring onboard, your luggage tags, your itinerary, and other assorted bits of information) means the cruise that you've been waiting for is usually less than 45 days away. For people like me, who not only book some cruises up to 18 months in advance but endlessly research and plan (mainly for cruises in the Med, Hawaii and Alaska -- not so much in the Caribbean), it means your vacation is real and near. I booked this cruise in March 2007 on the morning the itinerary opened so we could get our favorite cabin on our favorite ship, so it's been a long time coming. When we do the dance, I'll be certain to let you all know.

The weather here is beautiful so I'm going to do some outdoor work for the first time in months. I have to make certain I cover up and put sunblock on, though, since my skin is supposedly sensitive to the sun during chemo.

Happy 46th birthday today to Ann, my friend from England, who has been keeping in touch with me since we met back in 1997. I hope you're having a fabulous day!

Except for the cancer...

Had an annual check up (okay, it's been 18 months since my last visit, but who's counting??) with my primary care physician (formerly known as "my doctor") on Tuesday and he concluded, "Except for the cancer, you're healthy." That really cracked me up. I know what he meant -- no heart disease, no diabetes, no high blood pressure (my cholesterol is unknown at this point). Still, I find it funny that I can be considered healthy in spite of having bilateral pulmonary metastases.

Speaking of which, I don't know if any of you watched The Truth About Cancer last night on PBS. It was a sobering look at cancer, treatment options, and our odds of survival. Ed and I kept looking at each other and asking, "Who's idea was it to watch this???" I found some of it very interesting, though. A woman with metastasized pancreatic cancer said she felt pressure from her family and friends to keep fighting despite the lack of options. One of the oncologists pointed out that for people with metastatic disease, one in 10 will live longer than two years but most patients are willing to try anything (experimental drugs, clinical trials) hoping they will be the "one." And that although many people point to Lance Armstrong as proof positive that if you keep pushing, stay in good shape, and have a positive attitude you'll beat cancer, his type of cancer responds very well to chemotherapy and that's why he recovered. Therefore, cancer doesn't care about your attitude or your willingness to fight. Chemo or other treatments will either beat it or not.

I know I mentioned I had a follow up visit with my surgeon scheduled for Monday the 14th. I didn't see him because he was already two hours behind schedule when I arrived for my appointment at 12:15, and 90 minutes later, he hadn't made up any ground. So, I rescheduled my appointment to May 12 and will provide an update at that time.

Tomorrow is chemo day again. My mom is coming to stay with us for the weekend so that Ed can get out to a swap meet. He refuses to leave me alone on "chemo weekend" so I guess she will be babysitting me. (Actually, can it be considered babysitting if you are watching your own child?) He'll be out looking for more car parts to buy while we read, eat soup and watch tv. Sounds like we'll all have a nice weekend. I hope you do, too!

Also, happy 22nd anniversary to Anne and Andy. Enjoy your mini-cruise!!

9 days since my last post!

Wow, time flies when you're not having chemo! The first cycle of my second round is completed and I made it through with the usual issues -- fatigue, some nausea, that weird sensitivity on my neck and upper back -- but by my birthday on Thursday, I was in fine form. I was even dancing in the kitchen to Ray Charles!! I'm not having any problem being 46, because for at least the past six months, I thought I was already 46! It's pretty bad when you don't know your own age. Anyway, I had a lovely birthday and Ed and I made a four layer cake, which we shared with our neighbors and friends. Yummy! We also had Turkish food for dinner, which I really enjoyed, and I received lots of beautiful flowers and lovely cards. I can't believe I used to get depressed over my birthday. One thing cancer has going for it: it makes you appreciate reaching another birthday and having people you love to share it with you.

The celebration and feeling great lasted a day and then while changing my clothes and having a coughing fit Friday night, I pulled a muscle in my back. Now I look like an old lady when I move around. I have a follow up with my surgeon today, so I'll mention it to him, but he'll probably tell me not to cough while I'm moving. LOL

Today would have been my dad's 77th birthday, so happy birthday, Dad! There are a lot of people thinking of you today. I really miss you, and wish I could give you a big hug and kiss, but I'm sending you one in my heart.

I'll be back soon!

First Cycle, Second Round Complete

Yesterday went pretty well. I did a little dance before Stacy, the chemo nurse, set up my IV and she got immediate blood flow. I hope I remember that dance in two weeks! I'm feeling nauseous today and will have a snack when I finsh this post before I go off to the hair salon to have my roots covered up. Thank goodness my scalp can still tolerate the dye -- there's a lot of grey up there!!

I don't go back to reread what I've posted and since this question has come up frequently (not necessarily from readers of this blog, I thought I would explain. I've been asked when my chemo treatments will end and the answer is, when they stop working. The issue is this: Since my tumors are so small, they cannot be removed surgically, surgical removal with wide margins being the gold standard for LMS and the ONLY way to "cure" it. Dr. K put me on gemcitabine to try to stabilize my tumors and allow me to continue my quality of life. Despite the side effects of this treatment, I still go to work every day, I can go on vacation, I can still color my hair, etc. However, this treatment will not cure me and will not cause the tumors to disappear (although shrinkage, as we have seen, is possible). When this treatment stops working -- and her former nurse informed me that the longest any of Dr. K's patients saw stabilization on gemcitabine only was 18 months -- she will either add a second medication (taxotere), which is the big guns and will cause all the problems you read about from chemo, or she will try a new, stronger, multi-agent chemo. That treatment will also seek stabilization.

When the chemo stops working and the tumors begin to grow, they can be removed when they are larger than 1.5 cm each. I doubt any surgeon would bother to do surgery if there are still more mets appearing. In fact, I believe you must have stability in your tumors before surgery would be scheduled.

So, chemotherapy will continue for a long time. I wish that that were not the case, that chemo could get rid of my tumors and I could go back to be NED ("no evidence of disease") on it, but that is highly unlikely. I now have a chronic disease and will not be cured under this treatment. There is no chemotherapy treatment that provides a cure for LMS. Sad, but true.

Those are just the facts, ma'am. No need to be sad or disappointed. It is what it is and we make the best of it. Right now, I'm enjoying life as best I can and definitely appreciating the things I can still do and trying to make the most of everything. No one ever knows what tomorrow will bring.

Sending you all hugs and hopes for a wonderful weekend.