AlizaMLS

Hi,
I had surg 4-9 for the abcess, fri 5-3 they removed the final drain and started the packing. they dont even have me using any type of cleanser around the incision which is open. its difficult trying to pack it myself im staying with my mom so she could help but she wont. im 4 hours from the sugeons office. i could call home health but i dont live here so not sure how that works.

HI Aliza- I am trying to help my husband, age 53, diagnosed on May 2013 with adenocarcinmoa of the abdomen, unknown primary. Tried the Sugarbaker surgery but they couldn't remove the tumors --bad locations--and he now has ileostomy, geting TPN, eating a little. They are trying some panc drugs based on molecular testing....not sure what to do next. He is in lots of pain and feeling very down....We have two teenage sons

Hi Aliza, How are you? I haven't seen a post from you in awhile and I know that you don't know me but I just wanted to check in and say hello! I hope that you are well and doing fine. Your posts are always so nice and so knowledgeable, I miss reading them. Take care and sending lots of love and blessings! xoxoxoxoxo Lilymadeline

I have been told that you are a wealth of knowledge and a very kind and caring person.

Hi Aliza, I was wondering about you. And missing you.Hope all things (you and computer) get healthy soon.......and stay healthy.

Could never understand why people don't get flu shots.....unless there is a good medical reason (such as having had Guillain-Barre syndrome). Or why people don't let their children have the necessary immunizations for measles, whooping cough etc. Why would you want your family to be sick and worse, cause illness to others? I won't continue this rant - raises my blood pressure.

I've missed you (and all your lovely parentheses [brackets too.....:-) ]). A person after my own heart! Oh yes, I dearly love the semicolon; and you?

In that vein, let me recommend a wonderful program/website/podcast for you: A Way with Words. Hosts Martha Barnette and Grant Barrett discuss discuss word origins, localisms, idioms etc. and answer questions from callers --- everything language. Hosts Grant and Martha are the best and have great senses of humor.

I can't get it on my local NPR station, so I listen to the podcast. And always have some episodes loaded onto my mp3 player. I follow them on Facebook, too. They ALWAYS cheer me up!

You can find out from their website if the program airs on any of your local stations. I know they broadcast way upstate NY (Adirondacks) and out on Long Island - 91.3FM, but I don't know if you can pick that up in NYC.

Anyway it's a lovely way to spend time if you don't have energy for much else. -j

Hi Aliza, If I remember correctly, you had your treatment at Sloan ?
I need a second opinion about my pancreatic cancer, next step in treatment. Do you happen to know a pancreatic specialist there that you could recommend ? I know yours is breast, but I thought maybe you might know of someone since you are in that world and seem to have a lot of medical knowledge. I hope you are doing well. Thanks Zoe

I see you are active and posting again. Does this mean that your computer made it back from Mumbai?

Good morning Aliza - how are you doing, hope you are healing and just keep a low profile while you recoup your strength. i know that's what I've been doing on and off all summer.

Hugs and healing vibes.

Hi Aliza, just checking in...hope all your issues with cellulitis have resolved...also curious about your meet and greet in NYC...did you ever get that off the ground? Sending good wishes your way.

Other then your computer issues, how are things going? Hope you are feeling better.

Thanks so much for your reply. I am one of those " don't want to be a bother " people. I will call tomorrow,you're right,I have a right to know. I hope you are doing well Aliza.Take care, Zoe

I say your post to baxendalen and checked out Kris Carr's website. I had a good laugh over the "Whiskey tango foxtrot moment." That captures the DX so well. Thanks for the link she has great recipes and is very inspiring.

Hi AlizaMLS- I have read several of your replys to various folks. Clearly, you are very well informed from both sides of the medical fence. I'm a patient at Moffitt. It concerned me that you did not list them as a 'great' cancer hospital. Was that an oversight? I understood Moffitt was THE place to be for PNET? Is that incorrect?
Also- my Atlanta doctor ( not Moffitt) told me that the tumor on my pancreas was gone... Not true- is that a potential mal practice? By the way- I'm not seeing him anymore!
Thanks for any insights you can share.

Hi Aliza, Thanks for your advice and for sharing your story. My decision for mastectomy is about the same as your reasoning. Ten days to surgery and I, too, have a very wonderful support system of family and friends. Thanks again

Aliza,
Hello, this is a great group to belong to. The members are very helpful and can answer all your questions and concerns. it's So, you just started treatment? Chemo and radiation. How often do you have chemo? Radiation? It drains me, I'm always tired. I have a couple more weeks of treatment and then I get 6 weeks off before we start round two of the battle. I can't wait to have some down time , my Mum and sister are coming to Detroit o visit me. I'm excited. Keep a positive attitude!

Just read that you were in the hospital for cellulitis...hope you are doing better by the time you read this...thinking of you and wishing you a speedy recovery.

Hi Aliza- so sorry to hear about the cellulitis (lousy) and your rotten treatment at the hospital. You strike me as being an assertive person (you have to be - you are taking care of yourself), but certainly never nasty. There is no excuse for the treatment you got from that nursing assistant. Too bad it takes so much energy to follow up on these things, but you should. Many hospitals have an ombudsman who might be able to help you deal with the bureaucracy.

My niece has lupus. Long time in the Dx, She was all set to go to med school, but realized she physically couldn't handle it. She's in a medical related field and copes as well as she can. I think she's about 35 now..

Cellulitis: go away, and leave Aliza alone. She doesn't want you around. Capisce?

Hello Aliza,
we got my husband to finally do the pet scan waiting on results. However he has had a few slip and a major fall in the bathroom and was unconscious ambulance came and he started to get aggressive they threaten the cops so we said no..he refusing to c dr or er say he fine but still confused at time not always. but aggetated or aggressive if we even talk about it. Me and my father law talk face to face with is oncologist she worried if bleeding in brain that can cause his symptoms. and she feels he incompetent for making any decisions . but he does good at times? were trying for tomorrow for an apt if not she said call the ambulance agian if they need to have them call the cops, but will they treat him to hospital or jail? Im not sure about this

Thanks Aliza ! I would be so grateful for any information you can give me.I wouldn't know where to begin so that's really nice of you. I'll let you know how it goes at Albany. Stay well. Zoe

I was reading your response to the woman who asked for a "toolkit" for helping her friend's son who was recently dx'd with leukemia and saw that you mentioned Rabbi Kushner and his son who had progeria...I had the extreme honor of caring for his son many, many years ago as a student nurse...I learned so much from them and have recommended and gifted his book so many times through the years. Glad to see that others use it too. Take care, hope you are well. Gabba, aka Grace

Hi Aliza, I have a suggestion for you. I mean it in a helpful way, and I hope you don't take offense. It's about the posting of URLs.

I was reading the thread that jluw put up about using a general v. breast surgeon in TN. You recommended a site to her:
"URL is wwwdotjiccdotorg. (Sorry I must write it this way...".

I wanted to mention that I have recommended sites and entered the correct URL and they were not redacted. I notice there are others post URLs that link automatically.

You could ask Greg what the current policy is. The comments you post are always very good, sensitive, and on point. My thinking here is that it may save you the trouble of extra explanation if you could post a URL normally.

I am no techie, believe me, so there could well be a good reason you post URLs the way you do and I don't know it. Meantime, I hope I haven't offended you, and if I have, I sincerely apologize.
I think you are an extremely valuable asset to the forum. -jad

Hi Aliza - thanks for the wealth of info. I'm in the car with my iPhone on passenger side. After looking at the Knoxville Comprehensive Breast Center website today I thot I saw 4 radiologists listed & 2 oncology surgeons but no oncologists. Maybe I missed other tyother staff. I thot the team should include breast surgeon, radiologist, oncologist, plastic surgeon at least. I am meeting with Dr. Webber the breast surgeon for my 1st consultation with him Thursday but they are having me also meet with a radiologist which will make my appt. 3-4 hrs. Is this usual? Does it mean they feel I need to get to surgery fast? And what about an oncologist? Wonder if I'll still have time for a 2nd opinion. KCBC's website is not very impressive and they spell lesions as leases. 1st impressions! Any feedback? Thanks, Joan

Hello Aliza,
family members have told me to start the work on power of attorney I have not done that yet it is very hard for me to get started on it. This is not he man he was. I cant accept it. I hear how people have fought this and lasted years with cancer he just giving up..I dont know where to start with it. I feel like were giving up if we start this process

Hi Aliza, had my appt. with the surgeon. I hope you didn't go to much trouble looking into other
surgeons for me. I'm not going for a 2nd opinion because this guy is fantastic.My husband and I are so impressed that we both feel he is the right one. I'm having a PET next week and a wedge resection on Sept 16th. I'm scared BEYOND words ! I have to get a grip because at this rate I'll have a stroke way before the surgery.! BTW Dr.
name is Thomas Fabian,head of thoracic surgery at Albany Med. In case anyone asks . It may be cardio thoracic, not sure. Hope you are feeling well. Zoe

Hi Aliza,I lived in the city most of my life,mostly in the east 50's. I moved here to Saratoga Springs when I got sick to be near my daughter who lives here.Believe me, I wouldn't be here if it wasn't for her. I actually have an appt. with a thoracic surgeon this Wed. at Albany Med. ( Dr. Thomas Fabian) I need another recommendation for a 2nd opinion. The more I think about it, the more I think I should make the trip into the city to go to Sloan or Mt.Sinai.I did hear of Dr. Raja Flores who is at Mt.Sinai and is HIGHLY recommended. We'll see what I think about Albany Med. and take it from there. Thanks for your good wishes.Take care,Zoe

Hi AlizaMLS, I do not know how to navigate this site too well. My email is msreje@hotmail.com. Can you email me your email? Marisa

Hi AlizaMLS, It is too bad that we don't live close. We could start a meet & greet LOL.
I was reading your post and notice that you have been given information that goes from one end of the spectrum to the other. Pay attention to your medical team as I'm sure they care about your well being. I like my medical team very much and try to do whatever they tell me to do! I'm told that most people w/lung cancer usually die on their third way around the pole of life. I am on my fifth and taking this drug called Tarsevia (?) anyway OMGoodness this is way out of my budget and league of elect LOL but hopefully it will work for me a minute. Only God knows when He is going to call it and not anyone else. Well they say and he says....who really cares?. What I say is like a drop in the Ocean and means almost that much too. How are you feeling; how is your attitude; how are your hugs; how is your love, how is reaching out; praying? At the end of the day we all do the best that we can and some of us won't make it who are absolutely healthy....go figure....I cry sometimes and some days I hurt so fricken bad even with my drug regiment in place and here we sit at this moment smiling with hope. No matter what happens..no matter what; we are going to be OK I care. Type anytime AlizaMLS LOL...Soni

Hi Alizia, I had a headache the very next day after surgery. The blurry vision followed. I could not take the pain medication, as it made me very nauseaus. They even had to give me anti nausea meds to enable me to have some pain med. After the first day, I took only Tylenol. Once I was home from the hospital, I started taking ibruphrophen. I went back to my plastic surgeon, and she followed up with the breast surgeon and the oncologist. I have an eye exam on Monday. I don't do any recreational drugs. I do take ambien and Benadryl nightly to help me sleep, but have done this for years actually. I do suffer from sinus issues, and it has been rainy here for the past two weeks. I will post once I find out what's going on. Thanks for the followup. I appreciate it very much!

Hi This is Tallgrass69 I had a ? for the unaffisial(spelling Wrong) librarian I am BRAC 2 Poss my mom had ovarion cancer in her 20's and breast in her 30's my grandmother pass away of breast cancer at an early age . Does cancer hit harder on one generation and not the next? like my mom is 65 now a 40plus year survivor. thank you If it even makes since to you then I'm sorry........

Hi, Aliza, thanks for your response regarding a bra after lumpectomy. I do have a couple of sports bras and hope they will do. I guess it's one of those things I'll learn as I go along!