Scan results

The results of my scans from earlier this week are a mixed bag. The CT of my chest, abdomen and pelvis shows stable disease throughout. The brain MRI shows some progression and four tiny, new mets. I have only taken Ibrance for one cycle (one month).

Dr G decided it would be best to leave Ibrance and get me back onto a taxane. My cancer seems to respond the best to this type of chemo. I've had four separate experiences with Abraxane! He has prescribed Taxotere (docetaxel), related to Abraxane and also a derivative of the Pacific Northwest yew tree. It has similar side effects as Abraxane but is given once every 21 days.

How will I receive this infusion, you ask, if my port has been removed? On Monday the chemo nurses will insert a PICC line:

A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).

After treatment they can remove the PICC line while my port site heals up and gets ready for a new port-a-cath. If it's not fully healed in three weeks, I can always have a new PICC line started.

Now onto a chemo-free weekend!

Stress + anxiety = anxiety + stress

The past week has been filled with stress and anxiety, no matter how you look at it.

Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)

At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?

With Anna Gottlieb, founder and executive director of Gilda's Club Seattle

A gift from Mutual of Omaha - my very own clapboard

In the end I talked about my cancer, how long it had been in my life. Mostly I spoke about how my recent knowledge of the US government's lack of funding of all research into all metastatic cancers via the National Cancer Institute indicates how little the lives of our citizens seem to matter to our government. The interviewer didn't seem to care for this topic much, but I got very passionate about it. It was a bit of a stress-filled morning.

On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.

Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.

The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.

More stress, more anxiety.

On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.

On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less

Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.

I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.

The latest

What with the Jewish new year last week, chemo and a medical surprise, I haven't had time to write lately. Here is a recap of the latest.

Even though Rosh Hashanah came at the end of my weekly chemo cycle, I overdid it with baking and socializing on Sunday. By Monday morning I didn't have enough energy to go to services, even to see Rik receive the honor of being called to the Torah. (Evidently at 9:20 am I was moaning, "I'm getting up," even as Rik was getting ready to walk out the door.) We did manage to enjoy lunch with friends on Monday.

On Tuesday I actually made it to synagogue for the second day of the holiday, just in time to hear the shofar blown. There is also one part of the new year's service that I love. We bow before God, as in the daily prayer services, but on Rosh Hashanah one can choose to actually prostrate, getting down on the floor and kneeling. I have done this along with the cantorial soloist for many years, partly because I want to know that I can, and partly because this is the one moment in the year when I acknowledge that I don't have control over everything in life. By kneeling before God, I remind myself that it's not all about me. I believe God has a plan, even if I don't know it or can't understand it.

Okay, back to last week.

On Wednesday afternoon I had chemo. When I woke up in the morning, I did something rare and unusual. I called the Amazing and Wonderful Nurse Jacque to say that I felt awful, my feet were in terrible shape from the neuropathy, I'd had an indifferent holiday at best, and to please ask Dr G to consider dropping one of the two chemos. Dr G agreed to drop the Taxol and only give me the carboplatin.

I also complained about a possible urinary tract infection and later I gave a sample to be tested for infection. Dr G prescribed something to help with the frequent need to urinate, which actually hasn't helped much. I'm waiting for tomorrow to call Nurse Jacque about the final results of the urinalysis and hopefully get an antibiotic. Even if it's only a slight infection, something has been going on for ten days. And if it's not an infection, what is it?

While at chemo Dr G decided my red blood cell count was borderline and would likely dip further after that dose of carboplatin. He ordered a blood transfusion. Surprise!

Thursday I went to my support group as usual. The nurses at the wound center changed my chest bandage and decided it hadn't healed much in two weeks. My former port-a-cath site is almost completely healed. At last some good news! The doctor in the wound center said keep on with what we're doing and that he'd been in touch with Dr G about possible options. I see Dr G this week and will learn more then.

The blood transfusion took all of Friday, mostly because I couldn't get up early in the morning. A friend visited until I started to drowse from the IV Benadryl. I slept for more than an hour and missed my 1 pm visitor. Thankfully she came back, brought lunch, and we had a good talk. Good surprises in the making!

I'm still having insomnia, even with my naturopathic doctor's recommendation of WellMind. Last night I didn't fall asleep until almost 2 am. My feet still hurt tremendously. I'm now taking medication for high blood pressure likely caused by the chemo. This has been a rough time. I look forward to a week or so break from chemo.

As I said, I see Dr G later this week and hope to have a plan, even if it's another brain MRI. Let's hope the carboplatin lowers my tumor markers and has killed some brain mets!

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.

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