Update on dental ouch etc.

I had chemo yesterday and also a quick catch-up with Dr G. He got the message from my dentist, heard all my symptoms (twitchy left eye, dental pain, numb chin) and agreed with Dr Winston that I should have a head MRI. Ordered, scheduled, and I added an appointment with Dr G for a few days later to get the results.

In the meantime, I'll continue on the eribulin etc. as already planned. Next steps could include cabazitaxel or capecitabine (Xeloda.)

Today my eye hasn't twitched at all, and I've been typing on the computer for hours. My mouth doesn't hurt either. My chin is still numb. So far, so good.

Dental ouch plus

I went to choir rehearsal last week with severe but intermittent pain in my mouth at the ONJ site. It took a double dose of Vicodin to curb the pain. I got in to see the dentist on Friday and she's not sure if it's more BRONJ pain or something else (cue ominous music). She took a panoramic x-ray and requested an older x-ray from my oral surgeon for comparison, and then would talk with Dr G. She said she would call me with the results of her comparison.

Dr Amy Hamilton is my new dentist, and she ranks right up there with Dr G, Dr Judy, Dr Klein, and the other amazing care providers on my team.

It's possible that I have active brain mets again, or even bone mets in my jaw. Evidently this is quite common in breast cancer mets patients, Who knew? Dr G will likely check in with me when I have chemo this week, and I will report what I told Dr Winston: numb spot on my chin, pain at the BRONJ site, and lately even an inability to find the right word in conversation.

That last scares me, but Dr G and I have already spoken about what might be the next chemo. I don't know if he will recommend another gamma knife treatment if there are more active brain mets. The first step is to confirm what, if anything, is happening.

It's been ten years, and I am still learning how to live balanced on this particular teeter-totter of metastatic breast cancer.

Lost and found

I had a panic-stricken moment last night. In the middle of choir rehearsal, I looked down at my hand and blurted out, "Oh no! Where's my wedding ring?" The Dunavettes immediately began to turn the room upside down looking for my ring. One minute later, my phone bleeped with a text from the rabbi -- they'd found my wedding ring at the shiva minyan house. I went from panic to relief in two minutes or less. Here's the back story:

I spent part of the afternoon making food for a family in mourning. My go-to dish for our synagogue's Mitzvah Corps is sesame cold noodles. I can make it in advance, it's tasty, and it transports well.

I like to cook with my hands, and I am scrupulous about cleanliness. When tossing the rice noodles with the dressing, it's easier to use my hands and not utensils. Sometimes I wear food service gloves, but yesterday I just washed my hands and tossed. Somewhere along the way, around 4:00 PM, my wedding ring slipped off, either into the bowl or into the foil dishes, and I didn't notice. By the time I noticed I wasn't wearing my ring, it was after 7 PM.

I don't know who ended up with my ring in their dinner, but as Rik pointed out, I am grateful that they didn't end up eating it. A friend returned the ring to our home, and it was waiting for me after rehearsal.

A side note: When we got married, my mother offered me my grandmother's wedding ring and my great-great-aunt's engagement and wedding rings. We turned Aunt Dora's rings into a beautiful engagement ring, but Mima's ring was too large for me. Rik wears it, and we had a smaller ring made for me with the same pattern chased into the gold.

A second side note: the sesame cold noodles recipe (without wedding ring!)

Sesame Cold Noodles

Serves 4 - 6 as a side dish. Easily increases to serve a crowd.

Sauce:

2 garlic cloves, minced or pressed

2 tablespoons Chinese sesame paste (or tahina or peanut butter)

1 tablespoon dark sesame oil

1 - 2 tablespoons tamari or soy sauce

2 tablespoons rice wine, vermouth or other white wine

2 tablespoons peeled, chopped fresh ginger

1 1/2 tablespoons rice vinegar

1 tablespoon honey

1/2 teaspoon chili paste or crushed dried red peppers OR 2 tablespoons sweet chili sauce

Pinch of five-spice powder

Toppings:

1 bunch scallions, chopped

2 tablespoons chopped fresh cilantro

1 cup shredded carrots

1 cup shredded cucumber

8 ounces pasta (spaghetti, linguini, soba or rice noodles)

Optional additions: Cooked shredded chicken, seared tofu or seared ahi tuna

In a blender or food processor, puree all the sauce ingredients until free of lumps and reserve.

Cook the noodles cooked according to package directions and drain. Rinse noodles under cold water and toss with a little vegetable oil to keep from sticking. Store noodles in bowl in refrigerator. Toss with sauce and toppings when ready to serve.

The latest

My tumor markers have gone up a bit (not statistically significant) but Dr G wants to watch this in case it's a trend. I will stay on the current combo (mid-dose eribulin, Avastin, Aromasin and high dose Faslodex) for another month. If the numbers trend upward again, we will consider changing treatments and perhaps rescan. I haven't had scans in months, but as Dr G says, the time to scan is when there's a reason to scan.

We breifly discussed Xeloda, which he prefers for treating brain mets, but is related to the 4FU that put me in the hospital for almost two weeks a few years ago. So he's reluctant to use it, but I push him on it every time we think about changing things up.

Then Dr G remembered reading about a drug recently approved for metastatic prostate cancer but also studied in metastatic breast cancer. It's called cabazitaxel. II have responded well to taxanes, and this particular drug has a much lower risk of neuropathy, which would be of real relief to my feet. However, it's given with steroids, and I'm not sure of how frequently (i.e., once a week for two weeks. etc.).

No doubt we'll cross that bridge when we come to it. In the meantime, I have another month of eribulin coming at the mama bear dose both times in the cycle. (I had the mama bear dose and the baby bear dose this time.)

Now to get ready for a houseful of singers!

Alternating low and middle doses

I went in for labs today and ended up getting chemo. Although I did fairly well on the middle dose of eribulin last week and this, Dr G decided to alternate the low and middle doses in this current cycle. In theory this keeps me healthiest and best able to tolerate the chemo. Dr G says he likes eribulin and is having good results with other patients as well.

I'll know more when I see him tomorrow and get my latest tumor markers.

Just a few days of steroids...

I had a great weekend. Despite the increased eribulin form the baby dose to the mama dose, the 4 mg of steroids gave me enough energy to get through the weekend.

On Friday I ran some errands and cooked a lovely vegetarian Shabbat dinner (challah filled with pear and cardamom; potage parmentier, stuffed mushrooms and apple tart a la Julia Child. H contributed a delicious kale salad). Then I crashed.

On Saturday we ushered at "The Book of Mormon." It was a full house, but Rik and I found a good place to lean on a wall during the first half and then he found two unused seats near an aisle, so we could watch the rest of the show in comfort. It was quite irreverent but funny, with lots of singing and dancing. I was surprised that the creators of "South Park" were such songsmiths!

Rik spent Sunday morning watching the big Seahawks football game with G and D. Then we went to Beth Shalom for our every-few-years congregation photo shoot, which creates a photo directory for our community. We brought Bobka and ended up with one picture where everyone looks good. After that Dunava had a three hour rehearsal in preparation for next week's recording session. We joined G and W for a yummy Chinese dinner and again I crashed. Now you know why I didn't join Rik at brunch. There was too much else to do and I have to harbor my energy.

I slept well on Ambien every night, but now will taper off that and use lorazepam as needed. My feet seem more tingly and numb on this higher dose but the neuropathy appears to be in the same areas, at least not growing. I still have hair. We will see if I am strong enough to get another dose at this same level on Thursday.

Back on chemo

My red blood cell count went up to 34.9 (higher than the nurse's!) after Tuesday's transfusion, so I had chemo today. Dr G put me back up to the middle dose of eribulin, which is about 1.5 times the lowest dose I had received for the past few months. 

We will see what we will see…. so far I slept all afternoon until 7 pm.

Marathon transfusion day

Yesterday I spent over eight hours at Swedish Cancer Institute getting a transfusion of red blood cells and Avastin.

Why did it take eight hours?

• Although the blood had already arrived at 8 AM, and I arrived at 9 AM, my port wasn't accessed and ready to go until 90 minutes later.

• Each bag may contain slightly more than 500 ml of blood, so may take more or less than two hours to drip.

• I was asked to give a urine sample for the Avastin after I had received both units of blood. I could have done this at any time earlier that day. I waited an hour for the lab to check the sample and approve me for treatment. Avastin takes only 30 minutes or so to drip.

Thankfully I had lovely visits with two friends. J drove me plus we drank yummy Starbucks mochas. A visited and picked up delicious Thai food for lunch. Rik came to get me at 4:00 but I wasn't finished with everything until after 5 PM.

We went home, fed the dog (who had waited patiently all day), and I fell asleep. Rik ordered pizza for dinner and when I awoke at 8 PM I noshed on pizza and then some Graeter's ice cream while we watched NCIS.

I was back in bed at 10 PM and slept all night. I feel more energetic today, so the transfusion must be doing its job. I'm still waiting to hear from Dr G if I will get eribulin tomorrow as previously scheduled.

Up and down

I spent the weekend feeling either too exhausted to move (and so napping a lot) or feeling terrific and totally normal.

Friday was tough. After being told my red cell counts were too low to receive treatment, we went to the funeral of our friend's mother and then to their house for the meal of consolation. It was almost 6 PM by the time we came home and I was very tired. I hopped into my pajamas and just nodded against Rik for a couple of hours.

On Saturday I was so fatigued I couldn't get out of bed. Eventually I did, and spent the day sitting on the sofa, sometimes lying on the sofa, either reading or sleeping. But around 4:00 I felt energized and went to the shiva minyan for N's mother.

Afterwards several of us decided to get some dinner and we spent an hour or so reviewing last year's and writing this year's annual new year's predictions.

I had even more trouble getting out of bed on Sunday. It was almost 11 AM by the time I got up, and again I spent much of the day on the sofa or in bed. This anemia thing is very annoying. I did however get up to watch "Downton Abbey."

Today I am meeting a friend for lunch and then getting my blood typed and crossed to prepare for tomorrow's transfusion. I have to be at the Swedish Cancer Institute tomorrow at 9 AM, which is very early for me, and I don't really know how long the transfusion will take. I guess I'll be there at least five hours, maybe longer. I think hauling myself out of the house by 8:30 AM is going to be a significant challenge....

Low red count, no chemo today

My red count was too low today to have chemo. Dr G remarked last week that he thought my red count was low, but decided that my white count and platelets were okay. Today he decided that I needed a blood transfusion. That explains why I've felt so fatigued lately, plus short of breath.

On Monday I will go back to Swedish cancer Institute for a "type and cross." I had a blood transfusion once before, a few years ago. Evidently the blood typing needs to be done each time, for a specific match. The transfusion will take 4-5 hours, and then I will get Avastin (my regular dose).

I have one friend already scheduled to come visit, but I don't expect anyone to stay for 4+ hours. I'll being a good book, my iPod and maybe the crossword puzzle so I can keep myself entertained. And I will use my Starbucks card to get a HUGE mocha on my way in. I have to be there at 9 AM!

A new year

I really wanted to write something profound about the new year.... but I took a nap instead. So you get my somewhat scattered musings in place of any well-crafted thoughts.

I celebrate three new year holidays.

There's the Jewish one, Rosh Hashanah, and there are several more Jewish new years as well, but we'll leave them out for now. This is the new year I celebrate with my family, ,y Jewish friends and  my synagogue community. We wish one another a sweet new year filled with good health, happiness and prosperity. Note which wish comes first. Always.

The Matched Set

Then there's the secular new year, which I learned in Israel to call Sylvester, after the pope of the same name. That's the new year I sometimes celebrate with friends. Drink champagne, eat a good meal, socialize and kiss your sweetie at midnight. Lots of people celebrate this new year. (Here is an interesting article about Saint Sylvester and the impact his saint's day had on European Jews.) 

Last is my own personal new year, August 20th. This is the date that my metastatic breast cancer was diagnosed. I'd been living with mets for some time already (no one knows how long), but on this date a doctor confirmed the diagnosis. He cried as he told Rik and I, this doctor we'd never met before. Every August I celebrate, again with family and friends, and blow cancer a big, fat, wet, Bronx cheer.

Years ago I told my cancer that I would give it living space in my body, as long as it's quiet. If it gets noisy, I ask Super Onc (Dr G) to throw everything we can at it to get it to quiet down again.

So I have nothing really profound to say about Sylvester, the secular new year, except to look for this new year to be a quiet one for my cancer and to look forward to celebrating my other two new years.