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.