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zeetera

Miss you all!

zeetera
10 years ago

Well I'm still breathing. Sorry I haven't been back sooner but I've been extremely busy. I hate to post and run but I'm at work and typing on a small Blackberry keyboard. Figured if I started a post I'd have no choice but to update it when I get home.

Hope all is well with everyone and their families. Nice to see an edit button now because that will allow me to talk more freely (or did I imagine that?)

bbl

Comments (37)

  • mojomom
    10 years ago
    last modified: 9 years ago

    Zeetera,

    I am more of a lurker here (posting a bit more often now), but I remember you and have thought of you often. It is great to hear from you and welcome back!

  • matti5
    10 years ago
    last modified: 9 years ago

    Oh my gosh it is so good to hear from you!!!! There have been many posts and searches for you. We have been so worried. Please update us when you get a chance.

    It made my day hearing from you :)

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  • heather_on
    10 years ago
    last modified: 9 years ago

    You just made my day! It is lovely hearing from you.

  • pam_25f
    10 years ago
    last modified: 9 years ago

    Hi! Welcome back.

  • satine_gw
    10 years ago
    last modified: 9 years ago

    So glad to see that post! We were all concerned and hoping to hear from you. Welcome back. Satine

  • glenda_al
    10 years ago
    last modified: 9 years ago

    Nice seeing you back!

  • lindaohnowga
    10 years ago
    last modified: 9 years ago

    Sooooo glad to see you here and know you are okay. Please update when you get home from work. You've had a lot of us worried about you.

  • sweet_betsy No AL Z7
    10 years ago
    last modified: 9 years ago

    I am surprised and glad to see your post. I hope that all is going well.

  • anne_ct
    10 years ago
    last modified: 9 years ago

    Oh WOW!

    What a nice surprise to see you back...in print. You've been in a lot of our prayers and thoughts over the past several months.

    Welcome back.

    Anne

  • joyfulguy
    10 years ago
    last modified: 9 years ago

    Great to hear from you ... and that things are O.K. with you.

    Hope you can find time to fill us in on your recent activities.

    ole joyful

  • juellie1962
    10 years ago
    last modified: 9 years ago

    I must have esp....I was JUST thinking about you when I logged on. Have been so wondering how you are!

  • sjerin
    10 years ago
    last modified: 9 years ago

    What a wonderful surprise to see you, Zeetera!!! You have been asked after many times, but the threads eventually drop down, after many posts wishing you well. I'm so thrilled to see your name and hope you are hanging in there!!!
    Erin

  • alisande
    10 years ago
    last modified: 9 years ago

    Ditto all the above. Happy to see your name here again!

  • nanny98
    10 years ago
    last modified: 9 years ago

    Goodness, you have been missed. Hope you can catch us all up on how you have been doing!

  • kayjones
    10 years ago
    last modified: 9 years ago

    Good to hear from you - we missed you, too!

  • zeetera
    Original Author
    10 years ago
    last modified: 9 years ago

    I am so sorry, didn't realize that I would be missed. You all are so sweet!

    I think the last time I posted here was after a few rounds of chemo. Finished the first 4 and was looking forward to the AC, which the doctors assured me was going to be easier. Well I had one dose of AC and it was awful. Was due to have the second one two weeks later but I noticed that the tumour on top of my breast and grown. It started at 7cm, went down to 2.5cm then went back up to 6cm. Oncologist rushed me to have the mastectomy. That was a breeze and thankfully I had no pain killers after, not even a Tylenol. Surgeon said it was because it wasn't cutting into any muscle. Was in the hospital for 10 days waiting for the drip bag (can't remember the name now) to stop filling. I didn't mind because it felt like being in a hotel. Lots of service and I got to go to the park next door to walk my dog, lol.

    Final pathology report said that it was 1mm away from my chest wall. My skin had bruising on it like the cancer was trying to get out of the breast but this wasn't mentioned in the report, so still not sure how close it was to the skin. The 7cm hard area on top of the breast was a combination of fibro tissue and cancer, so the oncologist said. The tumour right below it was cystic so it was filled with fluid and the lining around it had metaplastic cancer cells. This grew too because of necrosis, which the onc said was good. The other two way deep down in the breast was almost gone, which was good considering that they measured 4.58cm together. So a lot going on for my size B breast.

    So everything associated with my cancer carries a poor prognosis - locally advanced, triple negative, metaplastic, multi centric, high grade (9/9). All this that a mammo 4 months earlier did not pick up on. Right before surgery they did a CT scan which came back fine, thank goodness!

    Being that it was high grade and 1mm away from my chest wall it was decided that radiation would be necessary, which I would have to fly to the States to do. Thoroughly enjoyed my stay in Boston, well Burlington. Lahey was wonderful, so were the staff at the Sonesta hotel. I did not want to come back, even though I was by myself. My days were spent crafting and I had such a good time shopping at Joann's, Sewfisticated Fabrics and Walmart. Got some great deals at Joann's using their coupons. Then I filled the time crocheting and cutting out fabric. Made a ton of tulip dishcloths, lol which all sold.

    Finished radiation and returned. Oncologist said I had to have a post treatment CT scan. Went and had it and didn't hear anything back but kept thinking about how the woman behind the glass window barely looked at me when it was done, and the attendant did not come back in to see me out but someone else did. I always look at the reaction of the attendants to see if it gives a clue of the results. Took a trip to Halifax to get my son's college things because he never went back. Looks like I sent him on a 9 month shopping spree and any store in that vicinity selling Apple products should be sitting pretty good now.

    2 weeks passed and my appointment with my oncologist was approaching. Ended up calling a few days before and the receptionist said she would call me back. Surprise, surprise she never did. Went to the appt, saw the same receptionist and she apologized for not calling me back and said that the onc said that she would talk to me at the appt. Went outside and called my mom panicking and she said to just be brave.

    Got called in the office with the onc leading the way saying, "What makes you think that I would call you with the results over the phone?" Well duh, because you did after my last scan, maybe??

    So I'm shaking worse than a leaf and she said I know you're nervous but there are two lesions in your lungs. She had my report on the desk and I read it through her arm and saw the word metastastes. I asked what size, she said the largest was 1.8 cm. Didn't even ask her about the second one. Asked if I could go back on chemo, she said no. They're too small to biopsy but you can pray. She also said that she couldn't approach the radiologist to see if they could be caused by radiation, because she didn't have that type of relationship with him. ok...

    Since radiation I had severe spasms in my upper back and chest pains, which I brought to the attention of Lahey but they did not seem concerned. But after reading about lung nodules, these pains sounded like they could be caused by the lesions in my lungs. Called the oncologist and she yelled at me (second time the woman has gone off on me) that she doesn't believe me because the cancer in my lungs is small and to take ibuprofen(sp). Thought about it and something didn't seem right. I had asked them for a copy of my CT report but never had the nerve to look at it. But that evening I pulled it out and was surprised to read that there was only one nodule measuring 1cm x .8cm and an enlarged lymph node in my sternum measure 1.8cm. She took the lymph node as being cancer. So there was only 1 lesion. Before I reacted I paid for a copy of the scan and learned to read a CT by watching a Youtube video. Took a while but I found the suspicious metastasis and only saw the one. Fired the oncologist and they asked for the reason but no apology.

    New oncologist was much better. More calm and said that she wouldn't treat the cancer but let my body deal with it through diet and exercise. She ordered another CT scan which I had and the results was no change. She then recommended a PET/CT combo which I had to go back to Lahey to get, which I did a few months ago in November. Got Xanax to calm me down, which didn't seem to help much, but probably did.

    Had the scan in the morning and an appointment with my radiation oncologist Dr. Lo in the afternoon. Even Walmart did not calm me down that day, LOL. That afternoon I sat waiting for the doctor to come in and seriously thought I was going to pass out. He came in a few minutes late and did not shut the door. He said, "The reason I wanted to see you was so that you could take the results back to your doctor. Everything is okay!" I looked at him like he had two heads. Are you serious? Yes, everything is fine. Hugged him and left. Read the report over and over again and it said that the nodule had decreased significantly and there wasn't that much uptake so most likely benign. No mention of the enlarged nodes in the sternum, so I guess they did not light up either.

    Came back, thanked the oncologist and she said that I would be going back to my original cray cray oncologist. Didn't ask why but told her receptionist that I wanted the third and final oncologist at that hospital, not her. Found out then that my current oncologist is leaving. So I meet with the new one in March when I'll have another CT scan.

    Tried to keep my life as normal as possible, unfortunately that includes my bad diet which I'm trying to work on but it's hard. I could seriously snatch food from a baby's mouth, lol. Nurse said it's the hormones all over the place. So now I have to lose 30 lbs. I still work long hours and then I come home and stay up til 2 am sometimes crafting. Plus I get up after 5 am to continue crafting. Onc said to cut back on the late nights. Since the cancer has been removed I have so much more energy plus I'm happier. After being in funeral mode for 6 months there was great relief after the last test results, but I still live with the reality that it would be a miracle for me to make it to 2 or 5 years. 2 years equals 5 years of someone who has a more common type of bc. 5 years would be like 20. Bottom line is that not only is there no cure for what I have, but there are no known successful treatment plans. I've watched women who are not Stage IV at first die within 4 months. That's how aggressive it is. MD Anderson is trying hard and hopefully that will be our saving grace.

    I typed this quickly so please ask if I've confused anything.

    Sorry for this being so long but feel free to print it and take it to the ladies room with you. :-)

  • katlan
    10 years ago
    last modified: 9 years ago

    Good Lord Zeetera, what a roller coaster you have been on. I'm am so happy to see you posting again.

    Really happy to hear you have had good news and great results. You are in my prayers. Continued success fighting this horrendous disease.

    This post was edited by katlan on Tue, Jan 21, 14 at 19:13

  • patti43
    10 years ago
    last modified: 9 years ago

    Zeteera, I read your post with interest. I could hardly breathe wondering how it was going to go. It sounds good for now so enjoy every minute. Glad you're back at the KT and hope you stick around! Keep the faith--literally!

  • heather_on
    10 years ago
    last modified: 9 years ago

    Sending you a big cyberhug and prayers that you continue to do well. I know it is hard not to continually think of your guarded prognosis but I was given the same prognosis almost fourteen years ago and I am still alive and doing well. I had Inflammatory Breast Cancer ( a very aggressive fast growing monster) then, and went over ten years without a problem until I had garden variety cancer in my other breast. I am again cancer free. I am my oncologists and my hospitals longest survivor of IBC. My surgeon, when she did the needle biopsy told me to go for a cup of coffee and come back in a half an hour for the result. She knew just by looking as did I. I will never forget what she said when I came back. "A few years ago, I would have told you to go home and write your will. Now there is hope." Grab onto that hope and hang on tight.

    You do need to get more sleep. Your body heals when you are resting. Perhaps in time, as the months go by and you continue to do well, you will be able to relax more and get some rest. My family doctor told me I would live longer if I had less stress and I took his advice. I no longer let little things bother me.

    I'd love to hear more of your crafting projects. Being creative is wonderful. It is so good hearing from you once again.

  • pam_25f
    10 years ago
    last modified: 9 years ago

    Wow. What an experience. I hope you take the advice to get more sleep and rest.

  • FlamingO in AR
    10 years ago
    last modified: 9 years ago

    Wow, Zee, you have been thru the wringer! It's wonderful to see a post from you and it sounds like you have a great attitude! I agree that you need more sleep but I also know that when you're in a creative mood, sleep seems secondary. Please keep us in the loop and know that we are all pulling for you!!!

    This post was edited by FlamingO_in_AR on Wed, Jan 22, 14 at 7:35

  • cheryl_ok
    10 years ago
    last modified: 9 years ago

    Great to see you here again.

  • tami_ohio
    10 years ago
    last modified: 9 years ago

    Welcome back! When I saw your name on the post I thanked God. You have been in my prayers every day. And you will continue to be. I am so happy to see you back! And to hear your wonderful news!

    Tami

  • suzieque
    10 years ago
    last modified: 9 years ago

    Yay!!! It is so great to see your post and to have you back! Yes, you have certainly been missed. Lahey is only a few miles, literally, from me. You're right in that it is a great place. Welcome back!

  • Sue_va
    10 years ago
    last modified: 9 years ago

    Hi, Zeetera, great to see you here again. You certainly have been through a rough spot, and you are an inspiration to all of us here at the KT.

    Be good to yourself now and keep us posted about your every day life, including your crafting, and I hope your sleeping.

    Sue

  • alisande
    10 years ago
    last modified: 9 years ago

    Wow, Zeetera, you've been through so much! Your excellent attitude shines through.

    I don't know what your "bad diet" consists of, but if you can convince yourself that eating lots of fruits and vegetables (even when you don't feel like it) will strengthen your body's defenses against cancer and other assaults--it's true!--it could make it easier to fill up on these foods.

    If you haven't already read it, Anti-Cancer: A New Way of Life is a wonderful book.

    We all hope you'll bring your crafting to the KT and have a nice long sit.

  • lindaohnowga
    10 years ago
    last modified: 9 years ago

    You've been through the ringer more than once from the sounds of things. You will continue to be in my prayers, as you have been ever since your last post a long time ago.

  • susanjf_gw
    10 years ago
    last modified: 9 years ago

    did they mention anything about hormones or taking the suppression drug, anastrozole? and did you ever see the radiation md? mine was contained and only had a lumpectomy (and nodes were clear) but was warned that radiation does have side effects...

  • Georgysmom
    10 years ago
    last modified: 9 years ago

    It was just so good to hear from you. I guess you missed all the posts where we were asking if anyone has heard from you and wondered how you were doing. You sound really wonderful….great attitude and very brave indeed. I have to tell you, I laughed at the part about your son. It made me feel good when I realized, besides the tuition, the only thing I was out from my son was the dollar movies he went to for nine months. LOL. Please keep in touch…hugs and prayers coming your way.(((((zeetera))).

  • 3katz4me
    10 years ago
    last modified: 9 years ago

    I was so happy to see your post - quite an ordeal you've been through. I'm glad you are stable for now and that you're able to do things you enjoy.

    Susanjf - I don't think hormone blockers like anastrozole are indicated for triple negative BC as zeteera described hers to be.

    This post was edited by gibby3000 on Tue, Jan 21, 14 at 23:22

  • lydia1959
    10 years ago
    last modified: 9 years ago

    Glad to hear from you!!! Sorry that you've had to endure so much, but so glad that you are feeling better now. Hang in there... keeping you in my thoughts and prayers!

  • Lily316
    10 years ago
    last modified: 9 years ago

    Very good hearing from you. We've been worried. You have such a wonderful positive attitude with all you've been thru. That will serve you well. Get some more sleep... as I type at 2:04...lol... I have the same problem with sleep. Be well.

  • mamatoad
    10 years ago
    last modified: 9 years ago

    Welcome back! You've been in our thoughts and prayers. Your positive attitude is truly inspiring! I hope you will continue to feel better.

  • yayagal
    10 years ago
    last modified: 9 years ago

    We sure did miss you and prayed constantly for you. Try and focus only on what the dr. at Lahey said, could you fax all your reports to him and he can be your oncologist? That's what I'd do. As I stated before my sister was given a 30% chance of a 3 to 5 year survival and that was 22 years ago. She had a fatal cancer but it defies all logic and doctor's can't explain it. She goes to Tufts Medical in Boston. Keep the faith and I'll keep praying for you.

  • chisue
    10 years ago
    last modified: 9 years ago

    You're BACK! After all you have endured, including MD's who treat you like 'a case', not a person, you're still HERE!

    Thank you for detailing everything. Thank you for showing others how to advocate for themselves. Doctors and techs need to be reoriented from 'pure science' sometimes, reminded that like them, you are A PERSON --often a frightened person.

    I hope you can exhale now and relax a bit. Sleep. Eat well. Try some simple breathing exercises to lower your heart rate and still your mind. You've been on the Fight/Flight mode. Time to retrain you brain and body to the 'Off Alert" mode.

    The KT should have at least one sign that says: "Download Here"

  • sleeperblues
    10 years ago
    last modified: 9 years ago

    I've been thinking about you, too, and was really glad to hear from you. Sounds like you've been through the wringer. Glad you are feeling well.

  • joyfulguy
    10 years ago
    last modified: 9 years ago

    Thanks for sharing your story, Zee. Glad you're back.

    Good wishes and hopes going your way ... and some prayers offered on your behalf.

    Keep the faith, girl!

    ole joyful ... also prone to sleep deprivation (due to delayed bed-entry syndrome)