Someone on here (sorry, can't remember, recently praised the efficiency of Mayo at Rochester.....
I am CLL/SLL with CNS optic nerve/vision loss on Zanubrutinib/Venetoclax with several IT chemo with methotrexate, cytarabine and systemic methotrexate. Tomorrow I will be having a CT orbits to see if any calcification shows up in optic nerve which might indicate a meningioma rather than the CLL infiltration of the optic nerve which has been assumed to be the problem all along. Reversal of the vision loss was not expected but I fear the vision loss may "spread" to the good eye...most recent MRI narrative described atrophy of optic nerve in the chiasm. I know this is not a common condition and I am not asking for medical input, I am asking for advice on how to prepare for and navigate MAYO Rochester.....I will be seeing Dr. Sameer Parikh and staying at the Kahler.
I do not eat in restaurants since beginning of COVID pandemic and am wondering about fast food/carryout/room service/cafeteria at Mayo. I also suffer periodically from diarrhea (had a horrendous night the other night) due to the Venetoclax I believe and am already angsting about what to wear, what to eat, will there be a snowstorm when we are driving there, etc.
Sorry, laughing at myself.... any advice welcome. thanks. with gratitude. i realize how lucky i am but i am still nervous
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msnik
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I just started at Mayo. I see Dr. Lindsey Roeker who is in the same clinic as Dr. Sameer Parikh. The entire team there is awesome. I stayed at the Hilton next door. There is an extensive pedestrian skybridge/subway system connecting all the buildings downtown and we never had to walk outside (it was 15-25°F while we were there). Quite a few restaurants downtown as well and Mayo has a number of cafes within the complex.
Thank you Bigfoot. Since posting I spoke to a friend who has been up there with her sister and brother-in-law and she named several restaurants.
This may be a question more for a woman than a man.....here goes: I always encouraged my husband to "dress up" for his doctor appointments and he always has, i.e., a dress shirt, tie, nice pants and shoes. Since I have retired and since the pandemic I wear 99.99% jeans, t-shirt, flannel shirt, sweater/down vest/fleece vest.....laughing...yes, cold climate....but this would not fit the advice I have given my husband. So, dig into the closet for old possibly outdated "work" clothes from a prior era or mask up and go shopping for new clothes?
Like I said, probably more of a question for a woman. (no sexism intended, my husband still works so he still has presentable clothing to wear....I do not.)
hmmnn....no, they did not but that does not surprise me....I have only booked the hotel for the preceding night....but I did inquire about a late checkout.
I do have appointments with two other specialists scheduled for a month later.....
Dr. Parikh is a CLL specialist, but they also have me booked in late March with a neurologist/oncologist and a neuro/ophthalmologist and those appointments are spread over a number of days (one day in between has a telephone review and another has various eye exams as I recall)
I see Dr. Parikh and from what a few staff members told me he is one of the best in the department. I loved each visit. I am saddened to know you worry about what you should wear. It is cold there so just dress warm and comfortable. I am a physician myself and I would hate if my patients felt they had to dress up to see me. I wear baseball caps and clothes I’d wear to the gym so I am comfortable and walk a lot. You shouldn’t have to go outside at all based on where you are staying. You can door dash multiple restaurants of your choice. Good luck! I will be there next week.
hello 49andlife, thanks for the reply and reassurances. I have watched a couple of videos of Dr. Parikh and he seems like an extremely nice person.
I may be a lot older than you and still see "dressing up" as a sign of respect and/or a way to be perceived as a more serious person. Given you are a physician yourself you already have established bona fides with another physician I imagine.....
I am going to have a telephone call today in advance of the visit (to go over insurance and prescriptions I think) and I am now worrying more about the substance of the visit, i.e., what questions to ask Dr. Parikh to get the most out of the opportunity to consult with him.
I have an uncommon situation where my presenting symptom was partial vision loss. CLL cells were found in the CSF and MRI's indicated CLL infiltration of optic nerve....so, if you have any sugestions on how to get the most out of a second opinion visit, please advise.
I am a Mayo Rochester CLL patient. I have not seen the doctor you mentioned, but have seen several others on the hematology team. They all are absolutely wonderful, down to earth, and very caring. They will take their time with you and answer all of your questions.
I am female, and wear blue jeans and a nice top or sweater when I go. Never tennis shoes, but that is just my standard. You will see some people dressed up, but I think most are about as casual as me, maybe some a little less. Fear not, you will not be judged by your clothing choice! Wear something you feel comfortable in. The forecast is for cold weather, though. I suggest using the tunnels to get around.
As for food, the cafeteria in the subway level of Mayo/Gonda is very quick and has healthier foods for a reasonable price.My favorite place to grab a bite is the Victoria’s Italian restaurant…the have a restaurant and then a grab and go type counter tucked away. The grab and go is where I pick up my food. They have calzones, pizza, salads and other items. In that same area is a Duncan donuts. Both can be accessed through the subway, but it is a bit of a hike. Just go past the cafeteria and take the hallway to the left and follow the signs. If you walk a ways after the cafeteria and go to the right, you will find shops, Caribou Coffee, Cinnabon, and lots of sandwich type shops. There also is a smaller sandwich/coffee shop operated by Mayo near the Hilton subway level lab area where you will probably have a blood draw. Btw, you cannot tip the barista in the Mayo operated cafes.
While you are not required to wear a mask, I would suggest putting one on in the more crowded areas: waiting rooms, elevators, and especially the blood draw waiting area. I try to get a seat by myself away from others, but more than once someone with a cough and no mask has seated themselves next to me. Ugh.
hello Kathy, thank you for the kind and thorough reply. I am going to copy and paste it and ask my husband to print it out for me. I appreciate the clothing advice. I might splurge and get some new shoes that are not athletic shoes. I have been wearing some very comfortable "Hoka" but they are not new and pretty anymore....I always mask....in fact I double mask....I use an N95 with a cloth Israeli mask over it....laughing a bit at myself...I am on the far end of the continuum vis a vis being risk averse to airborne illness. thanks again for your thoughtful reply. msnik
Mayo Rochester is awesome. You will literally be in the best care in the world.
I understand your concerns about safety, food and bathroom issues. Your hotel is right next to the clinic. You can likely walk there via the subway without going outside.
There’s a good restaurant in the Kahler Grand that does carry out (Lord Essex). There are several great restaurants very nearby. Our favorite is The Old Bricke House that also does carry out.
We always wear masks and use precautions on the Mayo campus, and there are little snack bars in the Mayo building that are very strict about cleanliness and food is packaged. “Subway level”
We have eaten in the cafeteria at the Eisenberg building (Methodist hospital). Food is cheap there and ok.
There’s no grocery store right downtown or even a convenience store, but hotel may have packaged items for purchase.
There is no shame in wearing Depends for your own comfort and security. I carried an extra for my husband many times (remember wipes!). You will be in good hands at Mayo. Everyone is extraordinarily kind and helpful.
We will be there ourselves next week for appointments and a follow up procedure in his ongoing stem cell transplant process. So our fingers are crossed for ok weather too.
Chester's is the place we like to eat, you will not have to go outside for anything unless you want to. I suggest dress as you want, casual is fine. I wish you the best.
I looked at the menu and it looks great.....but, I think I will need to be more conservative to avoid GI problems......in a different stage of life, it looks fantastic! the photo of the rotisserie chickens is wonderful. (think I saw a decadent looking piece of pie also)
I'm glad I wore "athletic" shoes - lots of walking on hard surfaces getting to lab and imaging locations. But there were lovely, informative volunteers with wheelchairs to take you around. Don't be shy about asking if it becomes too much. I'd also recommend bringing a light bag to carry all the papers, maps, brochures, notebook, etc you will probably collect. All the best.
re: footwear, perhaps a new pair of Hoka's are in order (just noticed a split on outside of toebox since sending this.)
I appreciate all of the info. re: food, safety, locations, medical staff, etc.
I just got a phone call already re: the results of this morning's CT scan. No sign of meningioma. Not sure if that is good news or bad news but it is more information.
You’re getting very good advice from all who have responded. One thing I would add it is Minnesota. I wore boots when I was there lots of snow. Also, the tunnels that take you from the hotels to the hospital are very warm so you may not want to take your heavy coat and drag it around all day.
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MRD Negative in the bone Marrow for CLL / SLL after 15 Months on Imbruvica plus Venetoclax - Captivate trial. 
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