Thanksgiving

I really don't have anything interesting to say about Thanksgiving. You'd think I would, but it seems maudlin to talk about why am I still alive after watching so many friends die of their cancers. So I'm turning over this post to my wonderful husband Rik, who wrote it November 22, 2015 on his Facebook page.

Why I am grateful this Thanksgiving.

Great article from the New York Times today brought it all home. Adding some personal reasons too!

Grateful for Jill being in my life for 21 plus years, and her having the best team of medical care in the world over the last 16 years to manage her Breast Cancer and mets disease, but particularly the last month as she has been hospitalized with two infections, continued chemo, almost finished radiation on four spots and successfully managed Gamma Knife to her brain.

Also grateful for the support of my community of friends, neighbors, and synagogue members who have brought us meals, rides for Jill, company, and of course my colleagues at Roosevelt High for all the support in rides, hugs, good wishes, coffee, coverage of classes for me when needed, and giving me lots of slack, and my students who always are wonderful caring human beings who get that school assignments are not the most important things in life.

See attached photos for Jill in action making the cancer go away!

Jill wears the full gamma knife gear

"What, no second breakfast?!"

And at the conclusion of radiation to four separate spots. That face mask was awful and didn't even look like her.

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!

On to November

Pinktober has ended and I personally am glad. Although I figured out the best way as a metster to "celebrate" it (by spending time in the hospital), I am so glad that the end of pink products and pink washing may be over. To learn more about pink washing, go to Think Before You Pink.

A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.

Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.

Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.

Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.

When I have more to report I will check in. I might wait until I know about everything.

MRI results: quick update

Yesterday's head MRI showed mixed results -- the old mets are stable or reduced in size, but two tiny (3 mm) new ones have appeared. I will start Xeloda as soon as the drug ships from my pharmacy.

The good news: Xeloda is a pill I take twice a day, so I'm not tied to the chemo chair every week. I'm starting at a reduced dose. We'll see about the side effects. The 21-day cycle is two weeks on the med, one week off.

I'll continue on the same other meds (Avastin, Aromasin and Faslodex). Dr G may add eribulin back in, depending on how well the Xeloda works.

Why no gamma knife? If any of the brain mets begin to bother me and cause symptoms that interfere with daily living, we will look into targeted radiation therapy. But if we used gamma knife now, there might be more damage from radiation scarring than benefit from the therapy. And Xeloda is his "go-to" treatment for brain mets.

I had a realization this afternoon while talking with Dr G. I can keep chugging along, even with new issues coming my way, as long as my quality of life is this good. I can cope with new stuff while living well with cancer. And when that changes, I'll deal with it as it comes along.

Follow up to gamma knife

Tomorrow I go for my follow up brain MRI. It's been seven weeks since I had the gamma knife procedure and the doctors follow up with a repeat brain scan to see how things are progressing (or hopefully, not progressing). Mine is scheduled for 8:15 AM (uggh - I hate getting up early). The good news is that I see the neurologist later that same morning to get the results. Watch this space for news, we hope good news. 

The thing about a brain MRI is that you have to go all the way into the MRI tube. I don't think of myself as particularly claustrophobic, but there's something about being completely inside the MRI tube that makes me more than uncomfortable. I wear an eye mask (one of the best cancer-related gifts I've received!); the machine blows cool air over my face and torso; the technicians give me ear plugs to cut down on the clanging and banging; and of course, I take some Ativan to take the edge off my anxiety. The downside on Ativan is that it is sedating. I have to take enough to be relaxed but not so much that I fall asleep for hours afterward. I sure wouldn't mind falling asleep in the MRI tube but I want to be alert for the report!

Back on line

We've been away to Toronto for a family bar mitzvah. We had a wonderful time, and I promise to tell all about it in the coming days.

I think it's safe to say that I recovered nicely from the gamma knife radiosurgery. We hopped on the plane two days after I was treated, and I had no troubles with swelling or even in decreasing the steroids to zero. There are still two healing marks on my forehead (and probably on the back of my head, but I can't see there) where the frame was attached.  Given that I am practically bald from the chemo, although eyelashes and brows are still holding on for now, I don't worry about how quickly these marks will heal and fade. They're covered nicely by hats, scarves, etc.

I see Dr G in two days and will likely get the news if my tumor marker continued to fall or has been at least stable during the month-long chemo break to treat the now-healed shingles. I imagine he will have some kind of plan for a next step. Personally I am holding out for enough decrease in my liver tumors that we can consider cyber knife for any remaining liver tumors and maybe try a maintenance estrogen fighter, similar to what worked for me for so many years. But who knows.

In the meantime, if you have been following today's news on FDA hearings about Avastin, know that I had just started Avastin in combination with Abraxane. Although we saw good early results, it's impossible to say which drug is responsible for those results. I've had three or four doses of Avastin, certainly not enough to call it a lifesaver. Still, I would be in favor of the FDA approving it for use in advanced breast cancer, if only because ii appears to work for some women and we all want to keep as many options open for as long as possible. But who could possibly afford $88,000 a year in drug payments if insurance companies stopped covering Avastin, should the FDA rescind approval for its use in treatment of metastatic breast cancer?

Why should women have to die because of the price of a drug and the manufacturer's need for financial compensation? Genentech, get with it and stop seeking over-the-top profits.

Gamma knife the day after

I felt really well today Ran a bunch of errands, had lunch with a friend, went to an afternoon meeting, came home and did the ironing, made mac and cheese for a choir potluck, went to the choir potluck, and am now ready to crash. (Actually, I was ready to crash at 8:30 PM in the middle of a song, but a slice of "white Russian" cocktail flavored cake perked me up right away. Especially the Kahlua flavored whipped cream...)


I think the gamma knife didn't slow me down too much but I also think I will try to take it easy for the next few days. Don't be surprised if I decide not to blog for a bit.

Gamma knife

As requested, they did give me both two mg Ativan and some Versed. Here's what I remember about the procedure:

We arrived on time, checked in at the main info area, and went back to the gamma knife office, waited until someone eventually realized we were there. Nurse Beverly took good care of us, brought us to my personal waiting room with a big medical "throne" for me and some chairs for others. There was a nurse from Bellevue assisting Beverly so that she could learn about gamma knife up close and personal. Because I had been told it was okay to wear my own clothes, just no zippers or metal, I didn't have to put on the yucky hospital gown It always makes me feel more in control if I can wear my own clothes.

After conforming my name and birthdate, Beverly walked us through the day, so to speak, and told us what to expect.

Not me but another patient
getting the framework attached

First they gave me two mg Ativan, which hit full relaxation stage in about 30 minutes. Then the nurses helped Dr Foltz, the neurosurgeon, drill holes in my head for the framework, placing the framework on my head, and tightening it to perfection. I remember this clearly. The lidocain used to prevent pain while inserting the framework did not actually prevent pain, although it made it more manageable.

MRI machine

Dr Foltz lefts and I was taken to the MRI area by wheel chair. Mostly I remember getting onto the MRI bed and trying to arrange myself  they way they wanted me. I must have spelt through the entire MRI, since the last thing I remember is the nurse placing a washcloth over my eyes so I wouldn't be able to see in the MRI tube. The narrow, enclosed tube is what gives many people claustrophobia,

After the MRI we went back to my waiting room while Dr Vermeulen, Dr Foltz and a physicist coordinated my treatment plan, based on whether my three brain mets had changed in any way.  (I neglected to ask if they had changed.)

Gamma knife machine

Once all three practitioners agreed on how to treat, it was off to the treatment area. I recall a large white machine with a bed extruding from it on top of a round floor, maybe a round room. They asked me to get up on the bed and wiggle into the proper position, which was surprisingly tough given the three pound framework on my head and my being loaded with Versed and Ativan. Eventally I made it into position, because I don't remember the rest of it at all.

I must have been wheeled back to my waiting area, where Nurse Beverly and her assistant in training successfully removed all the framework. Again, it hurt some but was not overwhelmingly painful. My head was left very numb, kind of like what you experience when going to the dentist and one side of your lip and jaw feel funny when compared to the other. It felt like I was wearing a plastic cap on top of my head. They placed bandaids on each of the front two insertion spots, but just used antibiotic ointment on the back two spots.

I am on a slowly reducing plan of steroids to prevent swelling at the insertion sites and at the spot which got zapped. I go in for a follow up in one month and will get another MRI at that time to really see what's going on.

I'm told to expect some fatigue and sleepiness today and should be fine tomorrow. I've already had one major nap on the hammock Rik set up in the back yard. I will keep you posted as things develop.

Gamma knife a go

Today I met Dr Sandra Vermeulen, the "gamma knife gal." She knows a friend of mine well, and Dr V used my friend as as example of how well people can respond to brain mets radiation treatments. Dr V even explained about whole brain radiation (WBR) and why she felt gamma knife was best in this circumstance.

Together Dr V and I ruled out whole brain radiation at this time. The three lesions are very small and unless they have grown significantly since the MRI, they are good candidates to be zapped by gamma knife. Dr V's group has helped more than 3,000 people with gamma knife..

The prep includes inserting four pins, one each in the corners of my head. (This is done with Ativan for sedation and could include Versed, twilight sedation, if I prefer.) Then they send me to an MRI to be sure the mets haven't moved or grown since the last MRI. Next they check the plan to be sure the rads go in at the proper angles, then the actual treatment, and last, the removal of the frame and pins.. Last they de-access my power port and I go home. The whole thing takes about four hours and my only prep is nothing by mouth from midnight the night before.

I can't say I'm excited, but I am pleased to know that this is all done at one time. We scheduled a date, in the reasonable hope that the insurance company will approve it, and then a few days later, Rik and I can go to Toronto as planned.

I really liked Dr V. She drew pictures, answered all my questions, and spent about an hour with us. Her staff were also terrific, just what I'd expect of people working at the former Providence building. Plus any doc who introduces him or herself as FirstName LastName and can handle the same from me is a keeper.