I am a Bad Girl

Sorry I haven't posted more. When I feel well, I tend to be too busy to blog. Here's the recap:

Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.

Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.

My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.

In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!

Tumor marker continues to drop

I got a peek at my recent labs and my tumor marker continues to fall. It's down another 20 points or so (I can't remember). Since my Xeloda side effects are still minimal , with three days to go on this cycle, I will hope to stay on this as long as it works.

My feet are a little tender, especially the heels, and the joints in my thumbs feel the same. Nonetheless, this is much improved over the last cycle of Xeloda. Perhaps the henna is working!

All is good

My dear friend N reminded me today that I needed to update my blog, that people worry id they haven't heard from me for a while.

Basically, all has been fine since I last posted on July 6.  And when I feel good, I tend to be busier than not, which leaves less time for blogging.

My days have been basically the same: a doctor's appointment or other errands in the mid-morning that last until early afternoon, then a two hour nap, then dinner prep and an evening with hubby Rik.

I'm continuing to put henna on my hands and feet every other day (see Pub Med abstract). Today is Xeloda day 8 and my hands and feet are in pretty good shape. If things worsen, I imagine I will feel it by Thursday, but I am hopeful that the henna will help.

Tomorrow I start getting my Avastin and Aredia at Swedish Cancer Institute, since the Minor and James infusion center is no longer serving patients. I look forward to seeing my fave nurses at SCI!

Tomorrow starts Xeloda round 7

Today is my last day of respite from Xeloda. Tomorrow I start round 7. Having the extra week off has improved my feet and hands, but so has henna! A friend sent me this link to a 2007 PubMed abstract, claiming that henna, applied topically to the palms and feet, eases the symptoms of Hand-FootSyndrome.

I went to an Indian grocery store, bought some henna for use in body art (i.e., temporary tattoos), mixed it with water and began slathering it on my feet. They turned orange from the dye, but appear to be healing. It's only been a few days, so I don't know if the improvement is due to the henna or just time off Xeloda, but it can't hurt to try this for a couple of weeks.

Deciding that I didn't want orange palms, young friend R suggested I get henna tattoos on my palms. She volunteered to do it, but I didn't have the henna with me at the time. H and (another) R were at dinner with us last night, and they were willing to try painting my palms. Here is the result of their art:

Both hands

Right hand detail

Left hand detail

Finished product

 When the wet mush dries, it leaves behind black patterns that flake off, revealing the orange underneath.

Rik will help keep up with the painting every other night for a week or more, so that we can find out how much it helps in this next round of Xeloda.

For a how-to guide, check out Xeloda side effects: Henna Tip For Hand-Foot Syndrome. NOTE: I did not use lemon juice because of the cracks in my hands. To make the designs, we used a thicker henna base, put some in a plastic bag, and cut a very tiny corner (similar to using icing bags and tips to frost a cake).

Cancer stats

For those who are statistically minded, here is a graph of my tumor markers from 3/24/2004 to 6/18/2013. (Dr G likes to show me these graphs but I've never shared them.) Sorry if it's too small to read...

Plus here is my list of medical issues:

AR (allergic rhinitis)

Blurred vison

Bone metastases

Brain metastases

Breast cancer

Cancer-related pain

Cardiac murmur (I've had since childhood)

Cataracts, bilateral

Choroidal nevus of left eye

Drug-induced neutropenia

Dyslipidemia

Herpes zoster

Hip fracture

Hysterectomy 

Lymphedema

Osteonecrosis of jaw doe to drug

Pathologic fracture of femur (same thing as the hip fracture)

Pathologic rib fracture

Peripheral neuropathy

Post bilateral salpingo-oophorectomy

Staphylococcus carries

I can't even tell you what all these things are. (I think dyslipidemia has to do with cholesterol.) And I'm not going into my extremely long list of medications! But even with all these issues, I look forward to my 11th anniversary of living with metastatic breast cancer on August 20, 2013.