The latest

I saw Dr G yesterday and he reduced my Keppra anti seizure med to 750 mg twice daily. Hoping this will lower my fatigue but of course no way to tell yet only a day later.

My latest scan results show some improvement in the brain and lungs, not in the liver. I'll see Dr Vermeulen on Monday for a more definitive look at the brain MRI and CT. Dr V had put me on another course of steroids but I'm tapering off.

I'm getting a second dose of Keytruda today.

XRT and gamma knife

Tomorrow is the last day of this round of radiation. It will have been ten days, plus one especially for gamma knife to the brain. Of the four types of radiation treatment, I'll have had three: proton, electron and gamma knife, to five different sites (skin met on scalp, skin met on chest, lymph node on neck, lower right rib and brain).

The gamma knife lasted longer than I recall from my first experience, but of course I insisted on having conscious sedation that time, so I don't remember much. This time I accepted six mg of Ativan instead. The numbing lidocaine injections in their three inch needles (so Rik told me, I didn't see them, thankfully) hurt like the devil, but there's no way around that. At least the pain subsided quickly. I have four more tiny holes on my head, two in front and two in back. Those are covered by hair. They're all healing nicely.

Here are some awful photos. Like my snack and the bubble too? The bubble helps the nurse measure the exact shape of the head. I think the "crown" keeps my head still and must get attached to the gamma knife. They didn't show me that part.

Wearing the bubble

With the "crown" and enjoying second breakfast:
 hot mocha and a croissant 

I sent Rik home once it became clear that the procedure would take hours and he could at least be more productive at home than at the hospital. He didn't want to leave but how awful must it be to sit for so many hours with no involvement in what's going on? And at least he could be with the dogs. Or they with him. Not sure how that worked, exactly.

So, a long day. Dr V gave me a prescription of steroids, tapering slowly down from two mg four times a day over several weeks to none at all. The Decadron disturbs my sleep, but I hope a dose of Ambient will help that tonight. I seem to be fine. That first day afterwards was a bit odd. I think I made many verbal goofs but no one seemed to mind. Much. 

Tomorrow, back to my last session of XRT with the kindest, most respectful technicians since the last time. I gave them some vitamin CH as a small thanks for treating me with such delicacy and caring.

Posing with the face mask for regular radiation

Radiation etc.

It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!

1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!

2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.

3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.

4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.

5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam.  He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).

6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.

7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.

That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!

Taxotere so far

On Monday I had my first dose of Taxotere (docetaxel). The PICC line insertion went smoothly, the infusion went smoothly, and today was my first day off the steroids.

I have slept well the past few nights with the help of my buddies Ambien and Ativan. (Although last night I finally gave in to the famous Decahedron steroid side effect and shopped online. But I only ordered business cards. I have no explanation for the shoes I bought this morning.)

I woke up at a reasonable 10:30 AM today. After checking email etc. and buying aforementioned shoes, I showered, dressed, ate and walked the dogs. Up a hill. So I must feel okay.

I ran errands (library, grocery store), picked up Rik from school, ironed some shirts, and caught up on three old episodes of a favorite TV show. Cooked dinner. And now blogging. So I must feel okay.

I have noticed one new bit of potential neuropathy. The skin where my left thumb bends had been cracked for a few days. The crack has healed, but I do have some small pain there. Is it neuropathy? Who knows.

Tonight I will have my first night's sleep since Sunday without steroids. I will try to manage on my own, but may pay the price of reverse insomnia after three nights with sleep aids.

But I feel okay!

By the way, these are the shoes. Good price, no? I hope they fit, because they are too cute for words!

Pikolinos Gandia 849-8964

What's new in CancerLand

I was able to start another round of eribulin last week. At first Dr G wasn't sure that my numbers would rebound in time, particularly my platelet count, but everything came back up by the end of the week.

Dr G also gave me permission to reduce the follow up doses of dexamethasone (daily for three days after chemo). I took only 4 mg per day, and that seemed to be fine. I had enough energy without feeling completely wigged out.

The neuropathy in my feet continues about the same. It's apparently still confined to my toes and the balls of my feet. Occasionally I am in pain by bedtime, with searing foot cramps. Wearing socks to bed seems to have helped that. I think it has to do with keeping my extremities warm. If my feet feel warm, they don't cramp. Taking lorazepam in the evening if the discomfort is intolerable also helps.

I am beginning to feel some numbness in my fingertips and a tiny bit of tingling in the palms of my hands. I'll be sure to report this to Dr G when I see him next week.

Today I took a nap, for the first time in days. Maybe it was the steroids wearing off (today was the third of three days), maybe I was just bored, but one minute I was reading and the next I was snoozing.

And that's the news from CancerLand today.

Hopped up on steroids

I am on day two post-chemo and have been on dexamethasone (Decadron) since my eribulin infusion on Wednesday. This is the steroid that makes me a little hopped up (hah, a litle).

Yesterday I ran a couple of errands, did three loads of laundry, participated in a 90 minute conference call, baked a pecan pie for  Shabbat, made dinner for Rik and I, and hosted rehearsal for my choir. I had to take Ambien to get some sleep even after relaxing for an hour after rehearsal.

Today I went to Dr G's office for my Neulasta shot (to boost my white blood cell count), met a friend for some fun, came home and started more laundry and am now blogging. In a few hours we will go to friends for Shabbat dinner and bring the aforementioned pecan pie along with coffee flavored whipped cream.

My feet hurt, I feel stressed from the steroids, it's impossible to relax. I will try to cuddle with the dog and read a bit while the laundry does its thing. Maybe the Ativan I just took will help me calm down.

First day after new chemotherapy

I'm feeling more than okay today. I slept well with the help of Ativan then walked the dog, trimmed some berry bushes, made dessert for Sunday's Dunava retreat, did a load of laundry and ran the dishwasher.

Right now I plan to take a nap and later go to Shabbat dinner at a friend's home. That seems pretty much like a normal day to me!

Maybe it's the Decadron.....

Chemo rescheduled for tomorrow

We arrived, as planned, one hour before my chemo appointment for labs, only to learn that Dr G was supposed to order dexamethasone (Decadron), a steroid taken for three days while on Taxol -- the first day being the day before treatment. There was some conversation about whether I should have Abraxane today instead, but eventually common sense won out.

Dr G ordered the Decadron, which we picked up at our pharmacy. I take it twice daily for three days. I will receive the first dose of Taxol tomorrow, the second one next week, and see Dr G the first week in January, all as planned. The Taxol will likely be given once a week for two weeks, and the third week off, so the planned schedule fits this pattern.

Although this mixup basically destroyed plans for two days, I was able to use the time waiting at the Cancer Institute well. I wrote several thank you notes for last week's Dunava concert and Beth Shalom brunch and came home with most of the items on my to-do list checked off. And you know I put things on the list just to be able to check them off!

Rik moved a tall table back into our living room so that I can set up our menorahs for Chanukah, which starts Tuesday night. I don't know if I will feel up to going to dinner at friends tomorrow night. It's too soon to predict how the chemo will hit me or how the steroids will help.