daily report

"If every day were like today... You'd weigh 174.9 lbs in 5 weeks." It's going to take some months for me to meet my goal.

Quest French presentation

Yesterday I gave a 50 minute presentation in French on Henri Matisse for the conversation

club at lunchtime. It went fairly well althought there were technical problems with the interface between Powerpoint and the YouTube videos I had linked to. I asked the group to tell me what they saw in the images I shared and people spoke up so i consider it a success. I learned so much from preparing that I was able to talk my way through it without reading a script. Next on the Matisse agenda will be a trip to the MOMA to see the Matisses in the collection. I was so nervous about doing the presentation that I didn't sleep at all the nighth before. The next night I overslept and missed the Hamlet class. Then last night no more sleep again. I have to talk to my doctor about this because my sleep has been irregular for the past few months.

Milestone

I have been weighing myself every morning and trying to accept that sometimes the scale will go up a few pounds as well as down, what with water weight and all. But today I broke a barrier when the scale read below 180 for the first time. I have lost ten pounds! still so much more to lose but I am delighted that it's going down consistently. I made myself roasted brussel sprouts for lunch. I'm oooking Rancho Gordo scarlet runner beans with goat meat in the slow cooker. I used to be able to eat scarlet runner beans from plants in my back yard in Berkeley. Nobody else in the building wanted them so i would just go out and chow down. When I go down another ten I will allow myself a restaurant splurge.

check-in time

I have been weighing my self all week and I have lost some weight. I don't know exactly how much because my starting weight fluctuated so much but I'll just say 5 lbs. I found myself lying in bed chanting "I will lose weight!" I'm so frightened about my blood sugar levels and my liver diagnosis. The good news is that if I can lose a significant amount of weight it may reverse some of the liver damage and control the blood sugar levels. I am doing a reasonably good job of staying within my calorie limit of 1330 per day. I need to snack on something other than nuts. It's going to be a long slog but if I can stick with this kind of diet for a couple of months I'll see real results. I have been lying in bed until noon listening to podcasts. I'm going to go easy on myself because I'm scared.

Slogging through another round of medical appointments.

If it's not one thing....I had some routine bloodwork done ordered by my oncologist. The results came back that my blood sugar is over the limit for pre-diabetes and my liver enzymes are also high, in the abnormal range. This is most likely due to the olanzapine. Dr Li ordered an abdomen MRI to check my liver and it came back that I have a Non-alcoholic Fatty Liver. She gave me a referral for a liver specialist so I have an appointment for that in a month or so. I'll be seeing Dr Clinton at the end of this month and I am signed up for a Diabetes management course through Betances clinic. I also went to the dentist to get a cleaning and check-up and a screening for zometa, a med that is supposed to treat my osteopenia that was revealed to be worse with my bone density scan. I need to find a way to fax the form back to Dr. Li. The treatment for diabetes and the fatty liver is the same: lose weight and reduce the visceral fat. I have started on a diet using the My Fitness Pal app. It allows me to track my calories, carbs, fat and protein as well as my weight and excercise. I have lost a few pounds already. I got new batteries for my scale. I don't like weighing myself every day because it's so dispiriting when it goes up. I have also tried to adopt a diet that includes more raw veggies, fruit, nuts and beans. The nuts add a lot of calories but they're good protein. I've been having cheerios and milk or a 3-egg omelette for breakfast, and 2 cups of red beans for lunch or dinner since I made a big batch. Next Ranch Gordo thing I'll make is lentils. I treated myself to lunch at the Delancy-Essex market after the dentist and had kale with salmon, cherry tomatoes, cucumbers, garbanzos, dates and walnuts with a little red onion. It was delicious and filling and almost my entire calorie allowance for the day due to the dates and walnuts. The My Fitness Pal gives a daily report that says "if every day were like today you would weigh X amount in five weeks." It allows you to have a weight loss goal that's reasonable and precise. I started at 190 (my god) and i"m down to 184. Five weeks target is around 175. My long term goal is 150. If I lose more than that I'll be happy but I'm trying to set an achievable goal for the next few months. Today I had nonfat yogurt for breakfast, an apple, almonds and cherry tomatoes for dinner and red beans for lunch. I went to the store and got eggs, milk and cereal, tomatoes and almonds, cottage cheese and bagged salads. I have some veggies in the fridge that i have to eat tomorrow: a red pepper, some green beans and carrots to eat with hummus. So I'm good for the next three days. I have sardines and tuna for protein. All that has had me feeling anxious but there is some good news: Rosemary and Arun were able to find a good apartment that will be less money for both of them. Arun got a part time job and continues to apply for everything in sight. He was so discouraged yesterday according to Rosemary. She's in Spain for another ten days, seeing all the friends and relatives. She got to celebrate Loren's and yaya's birthdays. Yaya is 96 and still able to walk and be lucid. A Spanish doctor says that Loren's walking difficulties are most likely due to the stenosis that the surgery corrected, rather than the CS fluid build-up. I hope he can get some more physical therapy for that. I also just got my quarterly IRA transfer and I have plenty of money. I haven't been spending much lately so I allowed myself to buy expensive raspberries at the store. I'm taking care of the cat who has been much less rambunctious and destructive than last time. I stuck stuff in drawers and covered the trays of stuff on the tables to prevent him from throwing things on the floor. He like to sit on top of the tall dresser and look out the front window. I wonder what the attraction in. People walking by infrequently? He also looks out the back window but showed no interest the one time I saw one of the feral cats sitting outside. The weathr has been lightly rainy and not so cold. I went to my Quest classes on Tuesday. I need to finish the powerpoint by Sunday for my presentation on Matisse. I also need to write out a script. I'm about 2/3 done with it. I'll finish it tomorrow. I also have to find a place to send the dental screening form by fax to Dr. Li.

leave the house every day.

New Year's intention setting: I will leave the house every day, even if it's just to go to the store. Today was New Year's Day and I walked in the freezing wind on the icy sidewalk to the closed library. The cafe was closed as well. I returned my books and trudged back home. Yesterday I walked to a restaurant to have brunch with Rosemary and Arun. It was a mile each way. It was not quite as cold as today but it was a strenuous hike. Tomorrow is Friday so I need to put out my recycling--containers in the entry way are full. I also need to break down the boxes on the table so I can start the new year with a clean surface.

Quest CCNY Lifelong Learning Community

 Inspired by my mother's experiences with lifelong learning at the Fromm Institute I searched "lifelong learning" and "continuing education" and stumbled across the Quest Lifelong Learning Community in the Bowery of Manhattan. I contacted them and they invited me to observe a class and then to come in for an interview. I found that I could take the J subway from Chauncey station to the end of the line at Broad Street and then just walk a few blocks to the Cunard Building on 25 Broadway.On the seventh floor there is a little cluster of classrooms, an auditorium, a lunchroom and some administrative rooms. My intake interview was very thorough and friendly. All the classes are taught by volunteers from the community of about 700 members. i've been to a couple of classes and some guest lectures by people from PBS and a Broadway critics show.  There was also a new members lunch with Q an A by committee chairs about how the organization works. You can drop in on any class, no need to register for the entire term. From discussion participation by the members it's clear that the folks are all very interesting. There is a Spanish conversation time at lunch and a French one as well. I have to keep my expectations low so I'm not disappointed but it's the most interaction I've had with people in years. 

Yearly mammogram

 I had a mammogram and ultrasound on my left breast. All clear! I also saw my breast surgeon. He's very petite and very handsome. He always shakes my hand and talks to me in a very reassuring way. Our appointment lasted all of five minutes and I paid $165 for my share. I have my next appointment in a year and it's in my schedule. Some time next spring i'll have another brain MRI and maybe some follow-up spine MRIs. I can't remember if they are in April or not.

I'm in the process of planning a December set of trips: to SF and then to MN with Rosemary. I sent Nancy a text asking if the dates we have tentatively decided on would work for her. I'll try to visit TJ in October or November.  Delta gave me a $200 coupon  that's good for a year since I've racked up so many frequent flyer miles by using my AmEx card for everything. I have enough miles to probably pay for my flights. 

To treat myself I got a new pair of Acorn slippers; the old ones are disintegrating on me. I also ordered a new Bagallini cross-body bag because the blue one I've been using every day is filthy and shabby. I got a black one so it won't show the dirt and i will not put it on the ground any more. 

I got my yearly deposit from my IRA so now I'm flush with cash. I just bought myself the two things that were on my list and I don't need anything else. I got a free microwave from Rosemary and Arun and I've been using it to heat up my beans and soups.  

Falls and Medical Guardian device

 It's spring and I finally hung up my down jackets. I had my quarterly MRI for the brain and it continues to be good. The next one will be in six months. My latest health issue has been falls. I was going into the subway station a few weeks ago and I tripped at the bottom of some wet metal stairs and fell on my knees. I yelled in pain and wasn't able to get up by myself. Some kind people helped me up from the puddle I had fallen into. I was bruised and sore but nothing was broken so I continued on my way to meet my friend at Sahadi's deli to buy Aleppo pepper and have lunch. I was wet and dirty from the muddy puddle but able to walk. The next day however I was really sore. I told my AlAnon sponsor and she suggested that I get a panic button. I realized that I had been so anxious about my mother getting and using one but it had never crossed my mind to get one for myself. 

So I went online and ordered a Medical Guardian button pendant. It came in the mail promptly. I paid for a year's subscription to get the discount. It's not cheap but if I'm going to do this, I need to make the commitment to wearing it all the time. I have fallen several times in the last few years and I'm fortunate that the worst injury I had was a sprained wrist in Spain. At least three times I fell and hit my face hard. I'm so lucky I didn't break any facial bones.

Since my fall I have taken the subway several times. I am very consciously holding the handrail as I go up and down the stairs. I've been wearing the button pendant all the time, in bed and around the house as well as outside. I need to set up the lockbox with the set of keys I had made so that the EMTs can get in if I fall in the house and can't get up. So far all of my falls have been tripping over my own feet or over uneven pavement where I haven't picked up my feet, and not from loss of consciousness. I also fell trying to put on my pants standing up so now I sit on the bed.

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.