More scans, more findings

I have an appointment with my primary care physician this afternoon. I will not forget this time!

Follow-up scans show that my brain surgery site is good and the smaller tumor is not growing. A spine MRI showed some nodules in my lungs and liver, so I had a CT scan for my lungs and an abdominal MRI for my liver. The lung nodules are very small so the recommendation is just to follow up with scans to monitor them. Same with the liver lesions. I also have a pancreatic cyst--more monitoring. So it looks as if I'll continue to have MRIs every three months for a while. I have a page full of notes to share with Dr. Clinton to fill her in on the past year. I guess if you do enough scans they find stuff. I'm feeling well. The main after-effect of all this and the medication is fatigue when I walk, but I have no other side effects of concern. Some very mild hot flashes from time to time but tolerable.

It's getting colder--highs in the mid-forties. I'll wear my down jacket. I have to walk about 20 minutes to the clinic.  I'll stop on the way home to get cat food since I'm a cat-sitter now.

 

Baseline MRIs for brain tumor

 The brain and spine MRIs were postponed again for machine maintenance but I finally got them done a week ago. The follow-up consultation with the neuro-oncologist confirmed that all is well. There's still a little edema around the radiation site but that's apparently to be expected and looks normal. The little baby tumor that is being observed is still just sitting there. He showed me the images from the last three procedures so I could see that it is not in a dangerous spot and is not getting bigger. I'll go in for another set in three months.

 The whole experience of going in to get the MRIs and then the follow-up consult was a lot about the subway ride and the waiting. But I rewarded myself with a box of raspberries when I got back to my cat-sitting gig and now I'm watching the Olympics on Peacock. I bought a small table fan to add a closer breeze because the standing fan is in the bedroom and its breeze doesn't quite make it to my chair. Now I'm feeling comfortable with both fans. Life in NYC without an air conditioner; there was a heat advisory yesterday and an air quality advisory today so watching Olympic coverage seemed like the thing to do.

I cooked some baby green lima beans from Rancho Gordo with sage and garlic. Today I also did a little grocery shopping and got some cherries, pasta and sauce, yogurt, milk for cereal, and some pouches with rice and pasta side dishes to try out. I still have some gai lan and mushrooms I got at H-mart a while back that I don't want to go to waste. Baking potatoes. I'm good for carbs but I forgot to get salads. I can do that tomorrow. My favorite local grocery store burned down!

FRUIT PARLOR GOTO|

Manten sushi: 26-course Sushi Omakase for only $50

Trip to Japan and Korea

 

In spite of the anxiety about scheduling my mastectomy we were able to go on our scheduled trip to Tokyo and Seoul in December (and I had the surgery on my return). The whole thing was wonderful. In Tokyo, we stayed at a little hotel near where Rosemary will do her residency this coming fall. We tromped around and did some visits to new neighborhoods and old. Ate wonderful food, including a return to Fruit Parlor Goto

and the oden restaurant Otafuku

Rosemary had some friends in town so we met up with them and went to an amazing sushi restaurant called Manten. Seventeen or eighteen small plates all of outstanding  quality. Best sushi I have ever had.  

We flew to Seoul and spent nine days there. Our hanok style hotel was lovely--our room had a balcony overlooking a garden. We stayed in the Bukchon neighborhood and enjoyed tromping around looking for restaurants and cafes. We went to many of the museums I had already seen when I was there by myself but I was glad to go back.

The food was great. We had barbeque a couple of times.

It was cold but I had my  puffy coat which was plenty warm.  We walked every day until my energy gave out, and sometimes Rosemary would go out on her own while I rested at the hotel.

Aftermath

 The radiosurgery was tedious  but uneventful.  I had to dose up with benadryl to prevent an allergic reaction to the iodide contrast dye. Every stage of the check-in inolved hurry up and wait. The actual radiation was a little uncomfortable because of the mask, but it didn't hurt. Now I have finished with active treatment for both the breast cancer and the unrelated brain tumor --surgeries and radiation-- except that I must take an aromatase inhibitor medication called anastrozole for seven years. So far the only side effects seem to be the occasional hot flash (which could also be just a response to the hot weather we're having, and some fatigue when I get out for a walk. Because of the weather I have been laying low and hunkering down in front of my fan. I went to the store today to get coffee filters and a few other things. I can only get the filters at the organic deli and they have lactaid but only whole milk. I will go to the other store in a few days to get salads and fruit. I stopped drinking as much because my PET scan showed a fatty liver. No more daily beer. I have still been having a drink about once a week when i go to a restaurant or sometimes I'll get a tall one for home. I have been having ice cream because they have been putting it on sale at my market. 

 

I was supposed to have two MRIs last week for the brain follow-up but they didn't authorize them in time. We rescheduled and I called my insurance company and they said it takes fourteen calendar days. Today I got copies of the authorization letters in my mail. They authorized the brain and all three segments of the spine. As far as I know, they only need to do the cervical spine but we shall see. Rosemary offered to go with me but there's really nothing for her to do except wait a long time so I told her no need. She may be out of town any way because she's going to Spain to see her yaya who was in the hospital and has had to move into a residencia. No more living on her own. At least in Spain it is affordable. When my sister and I were starting to look for a similar housing situation for mom it was hideously expensive. In the end we did not need it--she went so fast. 

It has been a little strange to be done with the active phase of treatment. I've been a little bit emotional after being so distracted by the logistics of traveling to clinics and getting procedures done for all these months. The MRIs coming up are to see if the tumor that was removed is growing back and if the little baby tumor they left behind is growing bigger. Then I will have more MRIs in August for the breast surgery follow-up. I am left to be more or less anxious about scans in between time.

Brain radiation

 I saw the brain radiologist and learned that I would need one radiation surgery treatment to blast the remaining bit of the tumor that was not removed during the crainiotomy. I will go in to have a head mask made and some CT scans done that will be merged with the post-surgery MRI to target the tumor for the radiation beam. This will happen next week, after I'm done with the breast cancer radiation treatments. The actual radiation treatment will be a week later. I have just one more breast cancer radiation treatment left, tomorrow. The main side effect of the radiation has been a sunburn-like skin change in the area that is being radiated with a couple of itchy sore spots. The radiologist told me to apply hydrocortisone cream as well as the Aquaphor lotion three times a day. Honestly it could have been a lot worse, both with the skin changes and the fatigue levels. I've been a little tired but not unable to take the subway to the clinic and back. My mystery lower intestinal distress issues have slowly been resolving as well, after ten days of real pain in the butt.

It turns out that they will be using iodide contrast dye for the CT scan and I am allergic to it. So they want to dose me with prednisone and benadryl before the scan. Needless to say, this is freaking me out. I will need to take three doses of the prednisone before the test: one 13 hour before, one 7 hours before and the last one an hour before along with the benadryl. I will need to have someone accompany me home because the benadryl will make me drowsy. I am trying not to be anxious about this. They said there will be nursing care there in case they need to inject me with something. Yikes.

Tomorrow I will see a neuro-oncologist to follow up on the genetic testing for VHL. So I will have the radiation treatment at the clinic in Chelsea and then the doctor's appointment uptown. Another day of subway rides between clinics. I have been to just about every Mount Sinai clinic and hospital in Manhattan.

Brain tumor

 As part of the breast cancer diagnosis I had some genetic testing done. I had no mutations associated with breast cancer but I did have a mutation associated with tumors on the adrenal glands. It was recommended that I consult with and endocrinologist so I did and she recommended that I have my oncologist order some scans. I ended up having a PET scan and MRIs. The PET scan showed no adrenal tumors but did show two areas of concern: a spot on my pelvis and others in my brain. The MRI showed two brain tumors, one fairly large and the other rather small. I was referred to a neurosurgeon who immediately scheduled surgery to remove the larger tumor and who said it was likely a metasteses of the breast cancer. Within a week I had a craniotomy to remove the tumor. I was in the hospital for three days so they could give me three lumbar punctures-horrible--and then they sent me home with a bunch of prescriptions for steroids and anti-seizure meds. They only shaved a narrow strip for the incision up the back and on the left. The surgeon said that the baby tumor was connected to the big one but that we should treat it with radiation once I had recovered from the surgery.

The experience in the hospital was OK in spite of how hard it was to sleep with the automatic blood pressure cuff that would inflate every so often. I was hooked up to monitors and IV lines and had to ask the nurses to unhook me so I could go to the bathroom.They also took blood at midnight for some reason. My brother drove up for Maryland and my daughter's dad flew in from Spain to be there for the recovery. Once I got home they cooked for me, did all the shopping and dishes, and basically waited on me hand and foot. I was so grateful they were there to support both me and my daughter who was very brave and positive throughout the whole ordeal. I am very fortunate that I have been healing well with no head pain or incision discomfort. Just fatigue and post anaesthesia grogginess. 

I was trying to wrap my head around having stage IV metastatic cancer while waiting for the tumor pathology report to come back. After ten days I got the report and it turn out that the tumor is not breast cancer related. I have a relatively rare but benign tumor called a hemangioblastoma. It's a primary brain tumor meaning it originates in the brain and is not from cancer elsewhere in the body. It could be a stand-alone tumor or it could be due to a genetic mutation called Von Hippel-Lindau (VHL) disease. If that is the case than multiple tumors can occur and it can grow back. I have an appointment with a radiologist tomorrow so I'll have a chance to ask questions, and I see the neurosurgeon at the end of the week to have my stitches and staples removed. My oncologist talked to me on the phone about the report and said she would refer me to a neuro-oncologist since she is a breast cancer specialist and doesn't know much about brain tumors. UPDATE. Neuro-oncologist says there is no Von Hippel-Lindau as per my genetic testing panel--yay!

So I'm enormously relieved that the tumor is benign. Bone scans have also shown that the spot on my pelvis is not cancer either. So I'm not stage IV. I still have to complete the breast cancer radiation treatment (I have 7 more sessions left so a week and a half). Then we'll see how many and what kind of brain radiation I will need to have to blast the baby tumor.

No chemo!

My oncoscore is an 8, very low. I was told this morning by the nurse who called me that it means no chemo! The oncoscore is what you get when they take some of the tumor tissue and run the genes through a database that correlates with survival rates after ten years. If you score low it means that no additional benefit would result from chemotherapy. Amazing. I will meet with an oncologist tomorrow to talk about the treatment plan so I'm glad that result is available to her. The next question is whether or not she'll recommend radiation. I had one lymph node with micro bits of cancer out of the three that were taken out. I don't know what kind of cutoff there would be: any cancer, radiation? If it's radiation, there could be one month of five days a week sessions. Even though each session is only about fifteen minutes, the commute will be at least 45 minutes each way plus the fifteen minutes to check in. But if they recommend it I will try to have a good attitude about it because I don't want to have lost a breast for nothing. There's an appointment with a radiologist for next week. I have a follow-up mammogram/ultrasound on the left side for six month from now.

I got a letter from my insurance company saying they denied the claim for hospitalization. I called them and was told I didn't need to do anything because they would resubmit the claim with the the proper procedure code. I'm not feeling very trusting so  I could call the Mount Sinai team to find out if that will happen. The guy on the phone said they'll do it because they want to get paid. Hmmm.

Breast cancer

It's been a long time since I wrote in this blog. I've settled into living in Brooklyn. It was interesting to reread my entries about the move here, my explorations and adjusting to my new place. 

A lot has happened. In September I was diagnosed with breast cancer from a routine mammogram. It is early stage, so I was reassured by everyone that it is very treatable. It took a long time to get a referral to a breast surgeon but I finally was seen by a doctor at Mount Sinai. The breast clinic is at the end of the L line in Chelsea, so it's easy to get there. I like my doctor very much. At first it seemed as if I would be able to get a lumpectomy followed by radiation.  I had two biopsies and one site was negative while the other was a tumor. But then I had an MRI which showed that the left breast was clear but there was a second site on the right side, too far away from the first to do breast conserving surgery so the recommendation was now a mastectomy. There was a lot of hurry up and wait with all the appointments and procedures. A complicating factor was that we had planned a trip to Tokyo and Seoul at the end of November, originally to coincide with Rosemary's artistic residency in Tokyo. But she postponed the residency so she could come to all my appointments with me. Bless her. I am so glad she was able to do that.

Long story short: we got to take the trip and then I had surgery at the end of December, just a few days before Christmas. It went well. I have one surgical drain. The pain was manageable with oxy and tylenol. The oxy gave me horrible constipation. I should not have taken it. The drain is gross but I get to have it removed tomorrow. I have been mildly uncomfortable as I heal--more in the armpit than around the big old incision. I chose not to have reconstructive surgery; I'll get fitted for a prosthesis. I have gone amazonian.

I have an appointment with an oncologist next week. Then I'll get to find out (I hope) what follow-up there will be. The surgery was successful in that there are "clear margins"--no cancer left. One lymph node was cancerous so they are going to do more pathology on the tumor tissue to determine my "oncoscore." If it's low, it should just be radiation. If it's high I might need chemo.  I'm going to hold out for no chemo, but we shall see. The whole experience has been more about the anxiety of logistics than life and death fear. I'm so lucky it was caught early and the treatment seems very straightforward. I have a follow up mammogram and ultrasound for next August. I'll have to have scans every six months. And I'll be taking some kind of hormone suppressor for five years. Maria and Drea both told me they had no side effects so I'm going to hope and pray that that is the case for me too.

Upcoming art excursions

Rosemary and I went to a Nick Cave exhibition at the Guggenheim. It was powerful work, with one floor dedicated to his earlier work and influences, another to present sculptural assemblages, and a room of his Sound Suits which we really love. When you see the earlier stuff, his engagement with the politics of black and queer representation are more overt. The sound suits began as a work of assembly that functioned as armor against racist violence. I'm sure he has a studio of assistants and "fabricators" that help him with the very labor intensive assembly of plastic and metal flowers, bird statuettes, buttons and beads, the detritus of thrift stores, fabrics and toys. 

Up next: Brooklyn Art Museum's Thierry Mugler show "Couturissime" which Rosemary says is really excellent.

The Poster House has two shows up that are worth a visit: Made in Japan and Black Power to Black People. I always appreciate the way the Poster House makes the most of its space to mount exciting shows.

There's a Georgia O'Keeffe show at the MOMA.

 

BAM

(wrote this Nov 6 then never hit publish)

BAM is the Brooklyn Academy of Music. I went to a movie with a MeetUp group there. It's an easy ride on the C and just a few blocks from the Lafayette stop. I saw Decision to Leave again and this time it made more sense, although I still don't get why she dies at the end. I got a senior membership and went back today to see the Met Opera simulcast with a nice little lecture  before about Verdi's life. We got all the way to the death scene when the livestream cut out because of a stupid automated bandwidth saving deal--so dumb. But it was revelatory, how much of La Traviata I remember listening to when I lived with Bill. I don't think I've ever seen the opera but I knew almost all of the music. There are several programs I'm interested in seeing, including a production of Trojan Women by the Korean National Theater that incorporate pansori. 

Here's Tito Gobbi singing "Di Provenza il mar, il suol" as only he can, so powerful and yet so expressive and flexible. No shouting.

 

 

Library

 When I first arrived here I sought out the closest library branch to get my card and to have a destination for walks. I was disappointed that the branch I visited had no magazines or newspapers, although it had a large children's section. Today I visited a different branch, one that is actually closer, but which doesn't have any magazines or newspapers either. I did read Alison Bechdel's latest book The Secret to Superhuman Strength. At one point the fire alarm went off, but we just sat through it until they figured out how to turn it off. 

I placed a hold on a biography of Margaret Fuller that inspired Bechdel--I'm going to  see what kinds of resources there are at the Brooklyn Public Library. It looks as if they do not have Kanopy or Hoopla, so I'll keep my Berkeley Public Library account open.

Fall weather

 It's time to experience fall weather in New York. It has been rainy and in the 50s during the day.  I have not wanted to go out walking on the days it rains, but I did get out on a Sunday to have lunch with Rosemary. We went to Sally Roots, a Caribbean place in Bushwick that serves brunch on weekends and a good guava juice cocktail. Another excursion was a lovely walk in the southern half of Central Park. And then our friend Carol was in town visiting and we met up with her and Maria and walked in Prospect Park after having lunch at a Middle Eastern place called Zaytoons on Vanderbilt, very good spinach pie.

In my neighborhood, as part of my explorations,  I walked to the store that carries Rancho Gordo beans and passed a Mexican-Salvadoran place called Maya Fusion Cafe. It turns out to have decent home-style cooking, so I got "una horchata y dos de lengua." I'll go back when I want hearty Mexican meal.

I started seeing a new therapist. It took a while to connect with the practice, but I'm seeing a student in a location that is right near Maria Hernandez park, so an easy connection on the L line. I like her!  And after my session today, I met up with Rosemary and we went to a cool vegan place called Hartbreakers. The salads were a generous bowl of kale plus romaine for me and shredded carrots and cabbage for her, with avocado and cherry tomatoes, good dressing. We added the chik'n seitan which was surprisingly good. A filling meal that is light on the calories. 

My next mission is to try out the Al-anon meeting closest to me on Saturday at 10. It's about half an hour away on foot, a little past Milk and Pull café.

Rancho Gordo beans

 Now that I want to eat more frugally, I hauled out my crock pot to make some beans. Not just any beans:  Rancho Gordo beans. I used to be able to get them at the SF Ferry building but they closed down that store, so I got them at the Berkeley Bowl (Oh, how I miss the Berkeley Bowl!). They are very fresh, heirloom and special cultivars that have terrific flavor. I went to their web site and you can search for locations that carry them by zip code using a map tool, so I found a store that is about twenty minutes away on foot, and went on a shopping trip today. It's a cute little cafe with some pantry items. I didn't stay to eat or drink anything because I'm on my weight loss program but I got black beans and pinto beans, just the basics. The company also has a bean club that there is a waiting list for, so I signed up for the waiting list. Here's company founder Steve  Sandoz cooking his beans without soaking them:

Weight loss goals

At a yearly check-up, I had some blood work done and found that my LDL cholesterol level was high. This has nudged me to take weight loss more seriously. I lost about ten pounds when I moved but then things have plateaued and I'm maintaining the same weight, not losing but not gaining either. I'm tired to feeling so sad about all these extra pounds I'm carrying around. I don't like the way I look, I get tired easily, and it's hard to find clothes that fit. Since I moved, I find that my eating has not been as healthful as it could be because I'm finding it hard to shop for the foods I want to eat at the stores in my neighborhood. The produce is not great. I can buy cottage cheese in one store but not the others. There's one larger "organic" market about 20 minutes away where I can get coffee, the good chips, and that lemon fava bean dip. At a smaller organic deli about 10 minutes away, I can get a few things but not all I want. At the supermarkets--and there are three close by--everything looks sad. I can get potatoes and onions and beer. The other obstacle, which I need to eliminate today, is that I don't have enough food storage containers I have a few Pyrex bowls with lids, but I need a larger tupperware thingie for crudité storage and a few more for steamed broccoli or green beans. I will walk over to the housewares store and get some. I don't want to use old yogurt containers because you can't see inside them and I'll forget and the food will go bad. I had an appointment with a nutritionist but she really had nothing new to tell me except to drink lots of water, increase my fiber, and swap lower calorie foods for higher ones. I know what I need to do: I need to increase my intake of fresh veggies and fruits, not eat chips with my hummus or fava bean spreads, cut out sweets and foods like empanadas and chicken wings when I go out. My goal for this week is to cook the broccoli and green beans I got, steam the spinach and kale, cut up cucumber, bell pepper, and celery, wash the baby carrots and just eat veggies and eggs. I got a loaf of Dave's 21-grain bread, too.  I need to get a toaster oven.

 Today I joined my daughter, her friend Hannah and Hannah's mother for an excursion in Manhattan. We met up at the Chelsea Flea Market and then had Korean food. It was lovely weather--the perfect temperature and no wind. Hannah's mom and I talked about life in Minneapolis, moving to Brooklyn and those times in our lives when we've done a big purge of stuff. She tells me that things in the Twin Cities have really declined--so many places have closed, neighborhoods have lost their cohesion, there are murders and car-jackings, a big gang war, lots of unhoused campers. Uptown is apparently almost empty with most of the stores and restaurants closed down, the movie theater closed, Calhoun Square an empty shell. We really were lucky to have lived there when it was lively and fun. I'm sad to hear about the decline and the cost of living sky-rocketing at the same time.

watching in September

 what I"ve been watching lately:

Finished watching and liked:  A League of Their Own, Ted Lasso, Reservation Dogs.

Ongoing: The Good Fight. I binged ALL the seasons and caught up to the latest (and last) season's premiere and second episode. I find it both entertaining and a little disturbing because it is all about the anxiety of today's politics.

House of the Dragon. Creepy sexual politics in the third episode, still watching it to see what happens next.

Rings of Power: Good, lots of parallel storylines.

Industry: creepy characters behaving badly while conducting incomprehensible financial shenanigans. Not great but I'm hooked.

Kdramas: watching three, but need to start a new one that is good. Maybe I'll rewatch something.

Little Women, gripping, still early days. 

When I Wish Upon You, Ji Chang Wook is so beautiful, I will watch this show just for him. 

Once Upon a Small Town, another one of these slice of rural life shows in which the Seoul transplant is the fish out of water. Our hero is a veterinarian. 

 

 

Cardinal neighbors

 One of the features of my new apartment, which is on the ground floor, is that the back door gives out on a garden with a couple of trees and some benches. I have not been using it this summer because of the heat and because the vegetation is overgrown and harbors mosquitos, but I expect that will change as the weather eventually cools down. Some of my bird neighbors are a family of cardinals. I heard a thumping noise coming from the kitchen and saw that a bird was bashing into the window. I was worried that it was not seeing the glass but when I approached, it flew away. There are bars on the window so it seemed odd that a bird would fly into it. A few days later it happened again. The bird was knocking on my window! I realized it was a female cardinal. A while later I met my landlord for the first time when he came down to mow some of the tall grass. I told him about the bird knocking and he said that this is because one of the tenants used to feed them, and that he himself gives them a nut every morning. I put some granola out and it got eaten but it didn't seem attractive to the cardinal pair. I had better luck with sunflower seeds--I threw a handful out and got to see the pair come down and eat them. I also saw a neighborhood cat try to sneak up on them. Apparently the back yard fence is referred to as the cat superhighway. I haven't heard the birds knocking on the window again but I also don't give them sunflower seeds every day. I did see that a juvenile was with them begging to be fed. I just put out some more seeds and heard their distinctive food chirps. Sure enough, the dad cardinal and one of the babies were out there eating, and the baby was being super-annoying and begging even though it was perfectly capable of eating the seeds off the ground. I"m glad to have cardinals as neighbors here because there were always cardinals near my home in Minnesota and I missed them in Berkeley.

Vintage shopping

 Today is Sunday and my anticipated excursion was to hop on the L and then walk to a couple of vintage shops on 3rd Ave not far from the L stop. But when I got on the L, it said it was only going to Myrtle Ave so I had to change my plan quick. I got off at Myrtle-Wycoff and got on the M that took me to the Lower East Side near the Metrograph and then walked about 30 (short) blocks up to 3rd and 22nd to the vintage shops I had mapped. I was looking for a couch or other living room furniture. The stores only had a few items, and none of the couches I saw would fit or were worthwhile. So I got to see what was in the stores and I got in a long walk. I took the 6 and then the J back. The day was hot and humid and while I was standing in the station waiting for the J I was literally bathed in sweat, completely wet. I had bought a bottle of water so I didn't pass out from dehydration but it wasn't the most fun. Accomplished: left the house and checked out the stores, had a long walk. Did not find a sofa. I need to check the Reuse America site every day.

Came home and finished binge-watching  Partner Track which was a very entertaining romance set in Manhattan law firms with a Korean-American lead and a focus on racism in the workplace. The main character has two love interests who are both white but the audience ships her with the Asian character Z and I can definitely see them getting a story in season 2.