Alaska

Last week Rik and I joined my mother, sister, brother-in-law, nephew and niece for a family vacation on an Alaskan cruise. We took the Sapphire Princess north to Ketchikan, Juneau, Skagway and Victoria BC.

Sapphire Princess docked in Skagway.

Although I felt ill for most of the trip with mouth sores and that viral infection, I was able to enjoy our excursions to see bears, whale watching (or as the guide put it, whale waiting), a little shopping, a lot of eating and general family togetherness. We haven't all been together since the unveiling of my father's gravestone more than three years ago.

A bear eating fresh-caught salmon.

The view of Tracy Arm fjord from our cabin.

Without question the highlight for me was seeing the bears and watching the salmon run. I also really enjoyed the one day I stayed abed, cuddled in a comforter and looking at the Tracy Arm fjord. It was a brilliant idea to have two cabins with adjoining outdoor balconies. (I asked for one in case I needed to stay in bed -- a good call -- and my sister decided that was a good idea for her as well.)

Good news!

Monday's CT scan indicated that my liver mets are getting smaller, although there are still seven of them. On top of this, my CA 27.29 tumor marker has fallen yet again from that all-time high of 300, to 150 at the end of June, now at 85! Altogether this means that the Abraxane/Avastin combo is really working.

Dr G says that he wants to keep me on this chemo combo. When my CA 27.29 drops to normal (30), he will order a PET/CT scan to check on where in my body I have active mets. Then he'll order another couple of rounds of chemo before he gives me a "vacation."

Although this was truly good news, it still is hard to face more months of chemo. If my tumor marker continues to fall at this rate, I am predicting about two months of active treatment before a PET/CT scan will be possible. A round of this chemo combo is three weeks on and one week off. Then another couple of months of treatment after a scan. I feel challenged by spending that much more time bald, feeling poorly, with low energy, etc. But if it will kick my cancer into submission, then somehow I will find the inner strength to keep doing it. And all indicators appear to show that this treatment does indeed work for me.

As an aside, I told Dr G about feeling stuffy and having a runny nose for the past two weeks, plus a mouth sore that won't go away. He suspects either I have allergies (hah!) to explain the nose and sinuses, or that I have a viral infection. It's likely not chemo-related, since my white blood cell counts are not low and that's what usually causes mouth sores.

He bumped up my dose of valacyclovir from 500 mg daily to 1000 mg twice a day to wipe out any viral infection. He also recommended Allegra in case it is allergies, but I am reluctant to take that at the same time and have it mask the symptoms. Then I'll never know if I have allergies or a viral infection. (I may have had a viral infection in my mouth and throat last summer. Or it may have been a side effect of the Doxil. We'll never know, since I was treated for both.) Plus I am more anemic than usual, which explains my feeling tired all the time.

All this helped me understand why I felt so bad on our recent Alaska cruise. I really was sick, and no amount of hot water with honey and lemon, using the neti pot, or gargling with a salt water/baking soda solution could really help.

Dr G is giving me another week to recover from whatever is going on in my head and mouth. My next chemo is scheduled for September 12, presuming I feel better.

CT scan

Today's CT scan went as well as possible, I suppose. The nurse who accessed my port did a fine job, but when we got to the imaging area, I learned that I had the time of the scan wrong and was an hour early. Luckily they were able to squeeze me in but I still sat around for 40 minutes with nothing to do but read. I could have slept later than 7 AM after all.

Then I had to drink the incredibly yucky barium stuff that gives me diarrhea, makes my stomach ache and makes me feel nauseous. I got through the fist bottle and about half of the second bottle before I felt too nauseated to continue. Next I realized I hadn't dressed properly. I wore jeans with a metal zipper instead of yoga pants, and so had to put on a hospital gown for the scan. Plus I was wearing a hat with a metal wire in the brim and so had to wrap a towel turban to keep my head warm during the scan. I prefer to wear my own clothing (keeping at least some control over the process) and had changed my hat at the last minute before leaving the house. Oh well, what can you do?

After the scan I was hungry despite my bubbly tummy so took my mom to the Mediterranean Kitchen for some farmer's wings -- marinated for 24 hours then grilled and covered with garlic sauce and served over fluffy rice. We came home and I tried to nap but couldn't really fall asleep. Now the sun is shining but I still feel an upset stomach and so will try to sleep a bit.

We're back!

Rik and I joined my family for an Alaskan cruise this past week. Although I had a head cold and mucositis for much of the week, I am feeling better now and wanted to say that we are home again. I will post more about our adventures and put up some photos in the nest couple of days.

On the health front, I am getting an abdominal CT scan Tuesday and will get the report on Wednesday. Here's hoping for a clearer liver!

Still under the weather

Although it's been more than a week, my head cold/mouth sores continue to linger. I'm taking a fair amount of Vicodin, gargling with salt water and baking soda and using my neti pot, but there doesn't appear to be much more I can do now. I'llcheck in again when I feel better.

Ninth mets anniversary

Today is the ninth anniversary of the day I found out my cancer had metastasized and broke my leg. That day is clear in my mind. I felt hopeless and not in control of my own life. My body had betrayed me a second time. And yet I am fortunate to sit here at my computer today, living about as well now as I did before. I have long outlived all the predictions for women with mets. I always said that I wanted to be at the far right end hand of the survival curve, and indeed, there I am.

I've celebrated each of the mets-iversaries by having fun and blowing a big, wet raspberry Bronx cheer to my cancer. Some years it's been a potluck dinner party (the fifth year was especially festive, with live music and dancing); other years have been quieter celebrations. This time we invited over our closest friends for a taste of my favorite four food groups: potato chips, chocolate, whipped cream and champagne.

You eat the potato chips first (kettle fried chips from Trader Joe's), then have a champagne toast. Those two items go well together. Next you eat chocolate (flourless cake from Whole Foods and the truffles G brought from Oh! Chocolate) with whipped cream. The champagne serves as a kind of transition from salty to sweet. Of course we also had iced tea and iced coffee, because today was a rare hot summer day for Seattle.

I also led the Torah service at synagogue and asked for (and was given) the Kohen aliyah. I also asked for those leading the service to recite a special blessing for me for healing and I must say, the man filling in for our rabbi was terrific in how he acknowledged my situation. He talked about living well, a sentiment I concur with wholeheartedly.

Our afternoon guests stayed until 4:00, at which point it was more than time for me to relax. FYI, I have a busy week coming up, so don't be surprised if I don't post as often.

PS My eyelashes are still hanging in there!

Doc's report, tumor markers stable

I saw the doctor covering for Dr G this afternoon and she felt that my mouth ulcer was not too serious, that my swollen lymph node wasn't really enlarged, and that I should be fine sucking on the clotrimazole 10 mg troches to help any mucositis from worsening. She also recommended rinsing with baking soda and salt, dissolved in warm water, four times a  day.

I was relieved to hear this. Maybe it's just a summer cold after all....complete with runny nose, headache, low grade fever, and sore throat. I'm sure using my neti pot will help also.

My tumor marker, drawn before chemo on Monday, showed a slight drop from 150 to 145 points. Although this isn't the large decline we saw after only four doses of Abraxane and Avastin, stable disease is still a good thing. I will of course learn more after the abdominal CT scheduled for August 29.

Now for a nap!

Still mouthy

Not only is the roof of my mouth still sore, but a lymph node in my neck is tender and my constantly runny nose is frequently bleeding. Not dripping, mind you, but red or pink in a tissue when I blow my nose. The bloody nose is a classic side effect of Avastin, not harmful at this point but seriously annoying. (I should have bought stock in the Kleenex company.)

I will see Dr G's partner this afternoon to clarify what is going on with my mouth and/or throat. Hopefully she will be able to confirm if I have mucositis, what the proper medication and dose should be, and if there is anything else going on. I've felt so well on this treatment combo all along that it was surprising to wake up Wednesday feeling poorly. And since nothing has changed over the past few days, seeing the doctor makes sense to me.

Mucositis maybe

Last night I noticed a sore spot on the roof of my mouth, figured I must have eaten something too hot and burned it. This morning the same spot was tender and it was painful to eat breakfast. Could this be the dreaded mucositis )mouth sores) again? (I had this side effect while on Doxil a year ago and it was extremely painful. I didn't eat for three days and lost 10 pounds.)

I called Dr G's office and miracle of miracles! nurse J answered the phone. Although Dr G is on vacation, she will review his scripts from the last time this happened and speak with the nurse practitioner/physician's assistant about what to prescribe. I can pick up new scripts tomorrow when I will be near the office anyway.

I had two more packets of GelClair left and used one at noon, am experiencing some relief so maybe it is mucositis. Sadly, the GelClair is no longer available in our area due to low turnover of product, according to pharmacy suppliers I spoke with last time. Hopefully other meds will help. And there's always "magic mouthwash" and Fentanyl patches if I really need to manage pain.

The day after chemo

Part of the reason Monday's chemo was so lengthy is that my standard of treatment is all over the map. As I understand it, the protocol is Abraxane on days 1, 8, and 15; Avastin on days 1 and 15. I think day 28 is supposed to be no treatment. But look at what actually happened!

May's cycle was close to as planned, except that my counts were too low on day 8.
2 Abraxane 1 and Avastin
9 Abraxane cancelled (low counts)
16 Abraxane 2 and Avastin
23 Abraxane 3
30 Abraxane 4 and Avastin

At the end of May/beginning of June, I was diagnosed with shingles and didn't have treatment that entire month. I had the gamma knife procedure on June 21.

July
6 Abraxane 5 (I don't have Avastin marked)
18 Abraxane 6 and Avastin
25 Abraxane 7 (again, I didn't note Avastin)

August
8 Abraxane 8 and Avastin
15 Abraxane 9 and Avastin

No wonder the nurses had trouble understanding why I questioned getting Avastin two weeks in a row! Especially since first thing I asked the lab if I needed to give a urine sample for the Avastin and they told me no, it wasn't necessary. Still, Dr G knows his stuff and he wouldn't have ordered it this way if he thought it would be a problem.

The upshot is that we had a longer day than expected. I indeed had to give a urine sample; we had to wait until the lab finished their work on it; then more waiting for the pharmacy to mix the drugs. Yesterday's chemo nurse was good about giving me the drugs out of protocol order. It was foolish for me to take up a chair while waiting for the Avastin to be prepared when the Abraxane was ready.

I still cannot get used to a 90 minute treatment taking 4.5 hours.

Chemo #9

We are just back from chemo Abraxane #9 plus Avastin. I am hoping for a nap but wanted to post that all is well, it just took 4.5 hours!

Brain MRI results

The results of today's brain MRI were good! The three tiny brain mets appear to have scarred over. However, because scar tissue remains visible, something will always show up on future scans. The protocol will have me return every three months for follow up scans for one year. I'll probably do that with Dr G and he will coordinate with Dr Vermeulen, the specialist.

It's good to have good news to share!

One of the 50 best

I was checking out my blog stats just now and via a lead from another blogger, learned that my blog was deemed one of "50 Terrific Blogs for Cancer Support." Actually, mine is number three on the list by and for patients. Thank you, nursingschools.net!

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!

More beach photos

Here are some more highlights of our beach trip:

It's cold walking on a Washington state beach, even in  August

But it's warm indoors

We have a hot game of Scrabble

Ready to head home

Chemo Monday

Today's chemo went smoothly from start to end. My lab orders were awaiting me at the desk; the nurses were on top of everything. On;y one problem -- there was a nurses' meeting at 8 AM and so the one poor woman at the lab, accessing ports, was overwhelmed from the get-go. Then the lab took more than two hours to get all my results up to the infusion center. All in all, we were there about four and a half hours. At least I had good company. A friend from my dancing days in Radost had been in contact and came for a visit on her one day off. We talked nonstop and passed the time beautifully. So despite the long day, I wasn't frustrated.

After another stupendous lunch at Cafe Presse (me: zucchini curry soup garnished with fresh dill and green olive tapenade followed by chocolat chaud with freshly whipped cream; Rik: one egg sunny side up and spinach salad with frites; both of us sharing a baguette), we came home to a little sunshine. I sat outdoors with a blanket over my legs and caught up on Sunday's newspaper and a good book, then went indoors to take a late afternoon nap.

We were both so full from lunch that we could nosh only a little dinner at 8 PM. Now I plan to relax for the rest of the evening.

Quick update on side effects: My eyelashes are mostly still hanging in there, but some have vanished and I don't know how long the rest will last. And I haven't written about lymphedema in a long time. Big Blue, my nighttime arm wrap, continues to do the trick and keep my lymphedema under control.

At the beach

We go to the beach at a tiny town on the Olympic Peninsula called Moclips, just north of Ocean Shores, WA. There's not much to do except walk along the beach, read, play Scrabble, nap and eat. And eat. Maybe watch a DVD. Basically it's a quiet escape from the press of daily life. We love it, as you can see.

It's cold and windy on a Washington state beach, even in August!

Bob needs love.

Okay, Bob needs more love.

Bob really doesn't care for the water.

But he'll follow me anywhere!

Too busy, too tired

I tried to schedule too many things into the days after our return form the beach, and am completely pooped. All those good beach vibes disappeared with the meetings, dinner with friends, and more meetings. I am going to try to nap before the next meeting this afternoon. Dinner tonight at friends and then hopefully folk dancing to live music. I will try to post some photos and the Yemenite food recipes tomorrow, but also need to take some time away from the computer. Please be patient with me while I am being good to myself for a couple of hours.

Back from the beach

We spent a few days at our favorite beach in Moclips WA. I promise to post with photos and highlights just as soon as the laundry is done. You wouldn't believe how much sand get in everything!