• JennyMiller's Avatar

    JennyMiller posted an update

    I had my follow-up appointment with my Radiation Oncologist yesterday -- and he concurred with my Primary Oncologist that I am Cancer Free -- Now, if I can just stay that way!!!! Last week, I had a routine Colonoscopy -- of course, I was nervous, scared and paranoid -- everything was fine. I will have Scans done in May and I am sure that I will get all nervous again. I just have to learn to be on guard but not paranoid. I am phasing back into the real world - not the same person - but appreciative of life, family and friends -- and most of all for the power of prayer that brought me through this storm. God is good!!!!!!!!!!!!!!!!!!!!!

  • JennyMiller's Avatar

    JennyMiller posted an update

    Time for an update!!! I had a follow-up appointment with my Oncologist on Thursday. Needless to say, I was terrified. Sitting in that Waiting Room brought back the reality of why I was there. Blood work was done first -- my counts are still a little off due to lingering effects of the Radiation. Other than that -- all is good -- and she pronounced me "CANCER FREE". I dragged myself into that office but I floated out. Now -- if I can just stay that way! -- I want to be on guard but I do not want to be paranoid. I want to have a quality of life where every little ache does not throw me into a panic that the cancer has returned. Be assured that I will work on this positive attitude. I am on Arimidex and I am doing good with it -- thank God!!!!
    The perfect end to the day on Thursday:
    I attended the Breast Cancer Awareness event at the Fort Drum Commons sponsored by the Samaritan Medical Center -- they gave us generous "Goody Bags" at registration which included a nice long sleeve shirt for the Survivors -- there were Vendor Booths with great "handouts" -- live music -- an excellent program emceed by a Breast Surgeon -- a delicious dinner -- and entertainment (a comedian who has been on HBO, the View, NBC & ABC - she was hilarious). They had all the Survivors stand to be acknowledged -- I stood proud -- I have won and I will do all in my power to continue to fight this evil enemy!!!
    They gave out tons of door prizes --- I won a Fall Decoration for my door and my daughter, Kim, won a centerpiece. It was a wonderful evening.
    The employees of Samaritan Medical Center (which included 17 Breast Cancer survivors) made a video for a contest and the video is on You Tube -- It is called the Pink Glove Dance. Please watch it - it is great -- the gal that starts it off is Bonnie -- the Cancer Nurse Navigator for the hospital and she is also a Breast Cancer Survivor - such a wonderful lady!!!!
    It has been a long and difficult year -- the prayers and support of family and friends have brought me through this storm. And --- this site has been a true godsend for me --- so many times, I was comforted by the kind and encouraging words. I found that the "darkest" time was between that dreaded phone call and the appointment with the surgeon -- lots of tears and sleepless nights - that is when I discovered "What Next" and was truly helped by all the special people on here. Furthermore, I was spared bone pain after the Neulesta Shot by that dear lady who posted about using Claritin, etc. Outside of here, I would feel so alone -- but we are "family" on this site!!!
    Thank you -----

  • JennyMiller's Avatar

    JennyMiller posted an update

    I put the following on Facebook -- just my way of trying to reach out -- I can only hope it helps someone:

    I have heard of 6 women in our area who were diagnosed with Breast Cancer in the last few weeks. There is not a network in our community to reach out to these women so I thought I would pass along a few hints to those of you who might know them or who might have someone in your life diagnosed in the future.

    * The darkest time is between that devastating phone call and the visit with her surgeon. She will be in denial with no sleep and lots of tears. She may not want to talk about it at this time but if she does, allow her to verbalize, nurture a positive attitude in her and give her lots of hope with survival stories. The survival stories are the key!

    * After surgery, confirm your love and support with prayers, cards and maybe some pretty flowers. A visit to help with a household chore would be appreciated by her and would give her caregiver a much needed break.

    *A pot of homemade soup, a casserole or a batch of brownies is a true blessing as she is unable to cook and the caregiver gets very tired. People have substituted Restaurant Gift Cards for this which is also very nice because it gives her an "outing".

    *During Chemotherapy & Radiation Sessions, offer to drive or to accompany them. It not only symbolizes your support but it provides company for both her and her caregiver during those long tedious hours.

    *Be patient with all her moods and feelings. Even though you may be upset at the time of her diagnosis, you soon return to your daily routine while she continues to deal with the pain, side effects and emotional trauma of this evil enemy day after day -- and month after month.

    *Quite often, a family member or friend feels awkward in these situations. Do not let this hold you back -- she needs you -- she needs to know that you care -- she needs that hug. It is the prayers, love and support that keeps her strong and positive in her battle. So often, you will hear "the ones that I least expected were the ones that were there" -- I often wonder if there is some disappointment behind this statement -- the point is to be there for her and you will be blessed in so many ways.

    My heart goes out to these women and I want to reassure and comfort each one -- maybe these hints will help them on their journey.

  • JennyMiller's Avatar

    JennyMiller posted an update

    Okay -- Here I am!!! Diagnosis was 11/11/11 - Surgery was 12/3/11 - Last Chemo was 4/12/12 - Last Radiation was 6/22/12 - Arimidex was started 6/29/12 - My energy is returning - My hair is growing back in. But I am wondering "What the heck happened to me?" It now seems like a bad dream -- a nightmare! That first phone call put me into another dimension -- a "twilight zone" -- a state of numbness which allowed me to trudge along my journey in a daze. Now, I am coming back and my world is becoming clear and the reality is setting in. I am certainly not the same person that I was. Yes, I do have sessions of worry that the "evil enemy" will return - I want to stay on guard but I do not want to be paranoid. I strive to maintain that positive attitude that has been supported by family, friends and prayer. I can assure everyone that the positive attitude is your most valuable tool. I find myself looking at everything differently -- the flowers, the sunset, other people, etc. We took our great grandson, Gavin, to Old McDonald's Farm and I found that I was a different person. When he wanted to spend more time feeding his favorite 3 goats -- instead of the usual "we have to go now" -- I told him to take as long as he wanted. When he wanted that "overpriced" set of horses in the gift shop, I first told him that we would get him some at another store -- and then I thought "what is wrong with you?" and I told him to get those horses. He was so thrilled -- he played with them for hours -- and he will always remember getting them at the same place that we had so much fun. I guess you would say that my new attitude is conducive to a better quality of life. I have to be careful what I read -- when I read about a lady's mom who had breast cancer -- was cancer free for 2 years - then it returned a 100 times worse resulting in a brutal death, I get really scared. Then I go to a site for Cancer Breast Survivors with Involved Lymph Nodes --- and I see numerous postings such as the lady who had 28 of 40 positive lymph nodes and she is doing fine 15 years later. I really do love that site!! I know that today's technology allows the best treatment and I have great faith in my Oncologist so I just need to look forward and enjoy life. There was a movie on Lifetime about the development of Herceptin. It was a great movie and made me aware of the research and development that is going on --- and also all the lives being saved by Herceptin.
    I appreciate the opportunity to verbalize here and to have the friendship and support of all of the other members.
    Thank you.

    1 Comment
    • lynn1950's Avatar
      lynn1950

      Jenny, You live and write with such grace. It will keep getting better. xoxoxo

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    I did it!! -- I made my Goal!! I had made the reservations for our Maine/Lake George trip before I even started chemo so that I would have a Goal - a "light at the end of the tunnel". It got close at the end when I had to take time off radiation due to burning, etc. However, the last day of radiation was Friday June 22 -- and we left on the trip on Saturday June 23. We spent a week in a little cottage in Old Orchard Beach, Maine. We visited Portland, Kennebunkport -- drove the shoreline to see the lighthouses -- sat on the beach -- and ate lots of lobster. Due to energy level, we would head out early for our sightseeing, have lunch and then return to cottage to rest -- then go back out around 4 or 5 to take the dog to the beach or or go for dinner ourselves. I am still having some occasional side effects such as some bone pain but each day seems better. I was told that it takes 3 to 6 months for the chemo to get out of your system. The radiation skin reaction peaks in 7 days and then begins to resolve -- the other side effects resolve in 2 to 4 weeks. When I arrived home yesterday, I was surprised to find that I had the energy to unpack, etc. after the long ride. So, I think that my energy is returning. My hair is growing in nicely -- lots of "white" though. In this process of returning to the 'normal' world - the numbness is wearing off and if I let myself think of the reality of what has happened to me in the last 8 months, I get scared again. I guess the answer is to move forward and not look back -- to stay positive. I started Armidex a week ago - so far so good as far as side effects go.

    My daughter, Kim, passed a quote along to me. It had to be written by a person who has traveled this journey because it is so true:

    "She fights with all her strength. She tells anyone who asks that she's doing fine. She forges ahead, determined and brave. And the whole time – she's waiting – hoping – yearning - for that one person who will sense the pain behind the smile, who will notice the tears that have dried, who will see beyond the mask that she wears - so perfectly. Someone who will hug her and tell let that it's ok to be tired, it's normal to be afraid, and that it's natural to cry sometimes. She continues to smile as she waits, hopes, believes…" ♥

    3 Comments
    • mom3b1g1969's Avatar
      mom3b1g1969

      Jenny I am so happy to hear that you made your goal and enjoyed your vacation. Its encouraging to hear these successes from others in the hopes I will be well soon also :)

      over 8 years ago
    • DaveWaz's Avatar
      DaveWaz

      That is fabulous news! You have been so excited about this trip for months. You are a special lady and we could not be happier for you.

      over 8 years ago
    • lynn1950's Avatar
      lynn1950

      Congratulations, Jenny. I am so glad that you were able to have such a wonderful time. Wishing you many such fine days ahead. xoxoxo

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    The Journey continues!!! I have so much behind me - Biopsies, Diagnosis, Surgery, Scans, Chemo, etc. Today I will complete session 25 of Radiation with 10 left to go. I have never been one to do things the easy way and I would say that may also apply to my Journey. Everyone said that the second set of Chemo (4 Taxol) would be a breeze after the first set (4 A & C). However, I found the Taxol to be much more unkind to me especially the joint pain. Then, of course - I developed the Lymphedema which is going to be my most unwelcome companion in my future. Then, everyone said that Radiation would be a piece of cake after experiencing Chemo -- not for me!! At first, I felt like I was flying through -- then the burning and peeling presented itself. At first, I used MiaDerm Cream -- then graduated to RadiaGel. I am fair skinned and was an easy victim. So, I had to take a week off -- when the Doctor told me, I had a melt down. He asked me why I was crying since I have come along this far and had done good, etc. I told him that I was discouraged -- that I wanted to keep fighting -- that I felt the time off was a loss of control for me. He was so kind and supportive. He gave me a prescription for Silverdene Cream. At first I was applying it thick but learned the hard way -- that I have to let air get to the area. So, I apply it thin -- and keep the area under a fan as much as i can throughout the day. It is really improving now.
    My Goal and "Light at the End of the Tunnel" has been our planned vacation -- our trip to Old Orchard Beach, Maine -- we have rented a quaint little cottage near the Beach -- and then on to Lake George in the Adirondacks.
    We are scheduled to leave on Sat 6/23 -- My last radiation is Fri 6/22 -- so I cannot lose any more days if I am going to make my goal. Please send off a prayer or two for me ---
    I cannot adequately describe my mixed feelings at this stage of my journey. I seem to be coming back to the real world but the clarity of my surroundings makes it all a reality again. I have never been a "clingy" wife but I find myself "hanging on a little tighter" -- I am not sure if it is a little fear or just a need for comfort. I don't seem to have the draining fatigue of the past but I sure do lack energy. The Doctor said it takes 3 to 6 months for the Chemo to get out of my system -- and meanwhile, we are dumping the Radiation on top of that!! -- so , better days should be coming. The good news is that I have my eyebrows and eyelashes back!!! -- and my hair has started growing in. I am using Nisim Shampoo which stimulates hair growth.
    My husband has been an excellent caregiver -- he has been doing so much for me. His love and support has been amazing. My daughter continues to be my advocate -- my son continues to watch over both of us -- I am blessed with a wonderful family and friends. It is so interesting and heartwarming to discover those that are there for you in your time of need.
    I know that my Journey is a Life Long Journey -- as I continue my battle -- but hopefully, the worst part is over and I can enjoy a decent quality of life. I have great faith in the power of prayer and I am confident that the Good Lord will continue to strengthen me and guide me.

    1 Comment
    • mom3b1g1969's Avatar
      mom3b1g1969

      You got those prayers and much more from me Jenny <3 You have battled a lot more than me but you (and your daughter) were an inspiration to me when I first began my journey in April. I hope you are able to enjoy your time away and come home renewed and refreshed. {{{HUGS}}} Chris

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    Another Hurdle - one with mixed emotions!! I had my Port removed on Thursday 5/17. I was looking forward to this day anticipating a sense of relief. However, I found myself to be apprehensive and scared prior to the procedure. Ending Chemo gave me the sense that I was laying down a weapon in my battle -- removing the port finalized that feeling. Once again, the Procedure was more involved than I had anticipated. However I did not have an IV - local anesthesia was used - it was done in the operating room. The Surgeon was great -- and the two nurses who were with him in the room were excellent -- one was a male nurse who was extremely kind and caring. He told me to hold his hand and squeeze during the Lidocaine Injections as it was going to be painful. Well, I squeezed so hard and I never let go for 10 minutes - until he asked if he could have his hand back -- and I think it took awhile for him to get feeling back in it. And, of course, the tear drops were escaping the corners of my eyes -- without my permission!!! Once the Surgeon started, it did not take long -- he removed the tube first -- applied pressure to neck area to avoid bleeding - then removed the port -- then stitched me up. I spent less than 15 minutes in Recovery and was on my way. After a stop at the Lymphedema Clinic to have my compression bandage changed, we headed back to Watertown for my Radiation Session -- What a grueling day!! As I continue to come out of the "twilight zone" of the first phase of my cancer battle, things seem to be coming back into focus -- like 'fine-tuning' a picture whereby it is sharper. As the numbness recedes, things like port removal hurt more. I am glad to have cleared this hurdle. I continue my battle with the weapon of radiation and then the pill -- and with the greatest weapon of all -- my faith in the power of prayer.
    I am looking forward to the Breast Cancer Walk in Gouverneur, NY tomorrow - a great group that provides assistance to Breast Cancer Patients. Then, on Sunday there is going to be a Passion Play presented in comparison to the journey of cancer. I continue to have great support which helps me to stay strong and positive in my battle.

  • JennyMiller's Avatar

    JennyMiller posted an update

    More Progress! I have completed my first week of Radiation. I am receiving treatment at our local Cancer Treatment Center. The caring staff have made this experience most tolerable. The room was rather scary at first -- it made it all so real once again - the tears managed to escape from the corners of my eyes during my first two sessions but all is fine now.
    It is a relief to have the Chemo done. My body seems to be healing up - no more bone pain - all bowel problems now resolved - starting to feel much better - best of all, it appears that my hair is starting to grow back in.
    I still have to travel to Syracuse for the Lymphedema Clinic. I have been fitted for my sleeve and glove. It will be a great relief to get out of the compression bandages --and to travel less to Syracuse.
    I continue to make every effort to remain positive -- However, as things begin to phase back to a more normal state, I find myself a little anxious. I am not the same person that I was and I just have to wonder how I am going to fit in now -- and if I will be able to control the "fear" so that I can enjoy my life. Through the power of prayer I have faith that the Good Lord will guide me and keep me strong.

    1 Comment
    • mom3b1g1969's Avatar
      mom3b1g1969

      Jenny,
      I haven't even had my surgery yet and I know that fear that you speak of. The wondering if you will fit in. The thoughts about what will people think if they see or know. I thinks it is awesome that you have such a strong faith. I have been wavering a little bit lately from being faithful. I have been having a lot of anger and I seem to direct a lot of it to Him. I guess becuz I know he is listening no matter what I have to say. My surgery is tomorrow.....wish me luck and stay strong and faithful :)

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    The final Chemo Session (#8 - 4th Taxol) was very unkind to me. The side effects of a session usually hit day 3 and last 2 to 3 days. However, they lasted over a week this time so they overlapped my low blood count days which was most unpleasant - so I had the whole bundle - joint pain, bowel problems, fatigue and even a touch of nausea which I never had before. I guess I could call it "the Grand Finale". At least, it is over and I am starting to feel better!! Yesterday, I went for my Planning Appointment for Radiation. They marked me up with my little tattoo dots. As I laid on that table in the darkened room, it all became a reality again and the tear drops kept escaping from the corners of my eyes but I hid it well. The doctor told me that I was "text book perfect" for the placement of my heart and lungs whereby they can get at the lymph nodes deeply. Apparently, there are cases where they have to back off somewhat to avoid the heart and lungs. Nice to hear positive things! I will start radiation April 30.
    I am now dealing with the Lymphedema. The original plan was to get me into the Lymphedema Clinic in January for preventive therapy with appointments coinciding with chemo sessions to save on extra trips to Syracuse. For reasons unknown to me, I never got in until 4/16. Since my arm has swelled, I am now enduring compression wraps to reduce the swelling. I have to go to the Clinic in Syracuse twice a week. When the swelling goes down, I will be fitted for a sleeve that I will wear for the rest of my life. If I would have had the foresight to personally pursue an appointment instead of waiting for the referral process, I would have saved myself the discomfort of the compression process and the extra trips to Syracuse.
    I am looking so forward to having my port removed on May 17th and to having my hair start to grow back. I am going to make every effort to stay positive and enjoy each and every day that the Good Lord gives me.

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      Your positive attitude is incredible - and congrats on wrapping up the chemo!

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    IT IS FINISHED!!! Chemo #8 (#4 Taxol) was done today!!-- (just have to get through the side effects which will hit over the weekend). Lots of mixed emotions -- thrilled to be ending Chemo but I feel like I am laying down a weapon in my battle against this evil enemy. However, I will be starting radiation on April 30 so I guess I can say that I am picking up another weapon. Trip to Syracuse went well --got taken in early -- the Lidocaine worked this time so that the Port Access was much more comfortable - had consult with the Oncologist's NP to go over any questions and to review the medication and care plan following Radiation. I told her that I am not the same person that I was pre-cancer and that I would never be that person again -- she understood and agreed. I told her I wanted to be on guard but I did not want to be paranoid and live in fear that the cancer will return. We discussed this in detail and came up with a plan where I will be responsible to keep check of my body for any changes, stagger my appointments so that I am getting a clinical exam every 3 months and most of all, I will make every effort not to dwell on it. I was told at the beginning that there is a 20% chance it can return ---- but, on the other hand, there is a 80 % chance that it won't --- so I intend to think positive and enjoy life!!!!!!!!!!!!!!!!!

    3 Comments
    • Staci1219's Avatar
      Staci1219

      Congrats to you!!!!! Yes, you can't dwell on the chance that the cancer will return...you have got to enjoy your life and just do your normal daily activities as you feel like it....and yes think positive :) I will be sending prayers your way.....Congrats again!!!

      over 8 years ago
    • MarnieC's Avatar
      MarnieC

      Jenny, congratulations for finishing your chemotherapy! That's wonderful, good for you. Staying positive and enjoying life is the best way to move forward. I've started a breast health blog so if you'd like to know more about that, please email me. Hope the weekend isn't too rough on you! xoxox

      over 8 years ago
    • DaveWaz's Avatar
      DaveWaz

      Congrats! That is great news! We sure hope you so something fun to celebrate.

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    Another Hurdle -- Chemo #7 (3rd of Taxol) -- Just one more left!!! Drive down to Syracuse went well. Got there early but they took me right in to access port -- once again I had applied the Lydocaine but it did not work this time - ouch!!!! -- vitals next -- and then visit with oncologist. Once again I have to rave about her -- she is so thorough, warm, kind and caring. She spends quality time with me and answers all my questions. Since the joint pain seemed to get worse after the second taxol, she gave me a script for pain killers for this time. She is setting up my referral to the Lymphedema Clinic and the appointment to have my port removed on May 17th.
    After visit with oncologist, I moved on to the infusion area -- my low blood count almost prevented chemo but they let me go through -- Thank God!! -- Took about 4 hours. This time I took the wheel chair ride out by necessity instead of choice. It is such a long walk through all the tunnels and I really have to conserve what energy I have. It is probably a good thing that I have just one chemo left because my body has just about had its fill. I should not really complain -- other than the joint pain for a few days -- I feel good other than the lack of energy. After the last chemo on April 12th, I should start building back up and growing hair -- can't wait. Radiation starts on April 30th -- I understand that I may experience some tiredness but not like the chemo.
    My dear husband gave me a special treat -- hot towels on my head and then "shampooed" my bald head - and then more hot towels -- it felt so good and was totally relaxing. I even got a foot rub -- I guess it was my night!!!!!! Once again, I could not get to sleep -- kept trying and finally dozed off at midnight and woke up at 3 AM. It must be something in that Taxol Bag because I usually sleep very well.

  • JennyMiller's Avatar

    JennyMiller posted an update

    Another Hurdle!!! -- Chemo #6 (2nd Taxol)!! Weather was great for drive down to Syracuse on Thursday. Arrived a little early. My husband made cookies for the girls at the front desk, for my oncologist, for the infusion nurses and for the patient "nourishment station" -- everyone enjoyed & appreciated them. They took me right in for vitals, etc. This time, I loaded the Lidocaine on my port and covered it with saran wrap and it worked. When they accessed my port, it was not painful as in the past. My time with my Oncologist was amazing -- I had so many questions about my prognosis and my future. I told her that I wanted to be on guard but I did not want to be paranoid -- that I did not want to live in constant fear of the cancer returning -- that I wanted to enjoy life again. She took her time, sat down, leaned towards me and gave me her undivided attention. She answered my questions and addressed my fears. When I walked out of there, I felt relieved and very hopeful. Blood work was good so next stop was the Infusion Room. I got a wonderful infusion nurse -- after she got things going, she got me a cold drink, a warmed blanket and she dimmed the lights. I actually dozed off a little. It took about 4 hours. When I was done, I gave into the wheel chair for the long trek back to the Parking Garage. We stopped for lunch -- I really did not want to put my wig on so - for the first time - I just went in with my baseball cap on. No one paid any attention and I was very comfortable. It was nice to get home and settle in. Just waiting for the side effects to appear. Last time, I got joint pain on Sunday and Monday -- and a large sore in my throat. Hopefully, it will be better this time. Last Chemo is April 12th -- 6 weeks of radiation should start April 30th. Oncologist says that I may be able to get my port out in May. Then I will start the 5 year pill upon completion of Radiation. Since I am Estrogen Receptive positive, she said that the pill is just as crucial treatment as the chemo. It looks like I will be all set for our planned vacation to Maine and Lake George at the end of June. There have been some real dark and uncomfortable times since I was diagnosed on 11/11/11 --- but I think I am now seeing a light at the end of the tunnel. The power of prayer has brought me this far and I am confident that the Good Lord will continue to carry me on my journey.

    3 Comments
    • Staci1219's Avatar
      Staci1219

      Wonderful news! Glad you had a better experience this time around!! POWER OF PRAYER always helps and yes it will carry you through to the end and beyond. If you need anything let me know. Prayers are coming your way, hang in there. Holler at me anytime.

      over 8 years ago
    • DaveWaz's Avatar
      DaveWaz

      It sounds like you are doing AMAZING! You have such a positive spirit and just radiate good things - even virtually! Good for you!

      over 8 years ago
    • pakb56's Avatar
      pakb56

      Good to hear Jenny. I know that diagnosis date and the following couple of weeks was horrid. Before starting chemo, I bought many scarfs, a wig. I looked hideous in a lot of the scarfs, so I took them to the infusion center where they were "scarfed" up! I only wore my wig once, I am finding I like the baseball hats.

      over 8 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    ANOTHER HURDLE!! - YEAH!! I had Chemo Session # 5 (1st Taxol) yesterday. I was a little apprehensive about starting something new so I was dreading the trip down to Syracuse. Due to the weather forecast of icy roads/ bad driving conditions between Adams Center and Syracuse for Thursday Morning, we decided to go down on Wednesday and stay overnight at the Sarah House which is a wonderful haven for patients and families of nearby hospitals. They have a grant in place for breast cancer patients and their families whereby there is no charge. It is such a clean, comfortable and loving home with a cozy living room and kitchen stocked with anything you would need. My appointment was at 9:45 on Thursday morning but since we were already down there, we went over early (8:30). The Registration Nurse took me right in - vitals, weight and questions. Then -- the Port Nurse took me into the Procedure Room to access my port and draw blood. I applied the Lidocaine in advance but once again, I cannot see where it helps. When she tells me to take that deep breath, it still hurts when she plunges that needle in. Always glad to get that over. Next -- to the Exam Room for appointment with Oncologist (1 hour early) -- she saw us there and came right in -- she is wonderful. I went over my list of questions and she took time to talk with me about each and every one. I do have some swelling in my hand on side of lymph node removal so she referred me to the Lymphedema Clinic. She scheduled an appointment for me for March 22 with the Doctor in Watertown who will be doing my Radiation which will start around April 30th (6 weeks - 5 days per week). Then we talked about Taxol and the side effects, etc.
    I am truly blessed with an excellent Oncologist who is caring and supportive.
    Next - to the Infusion Room - and preparation for my first Taxol. They gave me a benadryl pill and a zantac pill first. Then, they explained that any reaction to the Taxol would occur within the first 10 or 15 minutes -- therefore, they would be sitting next to me and monitoring my blood pressure, etc. After she told me this and left the room -- and already being apprehensive -- I looked at my husband and said "I want to go home" and the old tears slid down my cheeks. So, when they started the Taxol, two nurses sat with me -- and I watched the clock -- 5 minutes (I felt a little flushed and thought "oh no" but it let up) -- 10 minutes (I think I might make it) -- 15 minutes (I made it) and at 20 minutes the nurse told me I was "golden". A half hour later, I was sitting back watching TV and eating a sandwich so it all went well. Taxol takes 3 hours so we were out of there around 1:30. Usually I always insist on walking -- I just like to be normal. However there is a lot of walking due to construction -- long hallways, basement, tunnel, two sets of elevators, etc. --- and I was a little wiped out so I gave in to a wheel chair ride by a Hospital Ambassador who took me right to my car in the parking garage. The weather was fine on the way home and I was so glad to get past this hurdle and to get back to our cozy and safe home.

    My granddaughter, Trisha, who is graduating with her Bachelor's Degree form RIT had to create a Web Site on someone who is on a journey in their life so she chose me. She is using my updates, letters, etc. She asked me to write down my feelings about having cancer. To be honest, it was not easy. I finally was able to get my thoughts on paper and I just wanted to share them with my friends on the "What Next" Site as I am sure you understand.

    Here goes:

    Some of my thoughts on Cancer:

    Cancer is a game of Solitaire. I am the lone player. I am surrounded by family and friends who love me, who care for me, who pray for me and who support me. However, they do not have cancer. I am the one who has cancer. I cannot accurately relay to them what it feels like to have cancer. It is like trying to describe "giving birth" to an expectant mother - it is not possible to convey the experience - only those who go through it can fully understand. Cancer is the same for me. I cannot describe the feelings and the emotions.
    My world as I have known it for 66 years has ended. I now exist in another dimension which I could describe as a "Twilight Zone". I am alone in this dimension but I am aware of my family and friends hovering outside my zone. They are doing their best to be there for me -- to keep me strong and positive. Of course, I appreciate their love and support. However, I am still alone. They have their own lives aside from the world of my cancer. They can escape to those lives and be free. I can compare it to the death of a loved one. Family and friends grieve and they miss that person. However, as time passes, they return to their normal routine in life -- they regain the joy of life -- memories fade. Actually, it is quite humbling to realize that you are not the center of the universe -- that life goes on without you -- that your children and grandchildren can do quite well in life without your love and guidance. However, that is the way it should be -- Life is for the living and I would not want my loved ones to waste their energy in grieving for me.
    The darkest moments of this journey started on the day I received the phone call -- Cancer -- someone was saying that word to me -- it must be a mistake -- my stomach falls to the floor -- the phone call ends -- my life is forever changed. I go to the door and see my husband in the driveway -- I just look at him and blurt out "I have cancer" -- I say it but I do not believe it and it is a long time before I can say it aloud again. My husband comes in and calls our children. I am no longer in the real world as I watch the reaction around me -- I am removed in an eerie sort of way. The next days are spent in a vacuum -- when I try to face my diagnosis, I get butterflies in my tummy -- then I remind myself of all the survivors that I am hearing about and the butterflies let up for awhile. I am lost as to what to do next. I am not capable of taking action. Thank God for a daughter who takes charge -- does research -- is able to get me in to a top surgeon and top oncologist in record time. I now become a robot -- returning to the Clinic for 6 hours of torture (MRI, Mammograms, Ultrasounds, Biopsies) whereby I pass out at the end of the 6 hours falling on my face and breaking my nose --- then, my appointment with the Surgeon -- then, my pre-op appointment -- then, my surgery -- then, my joint appointment with surgeon and oncologist -- then, my bone scan and ct scan -- then, port placement -- then, echocardiogram -- then the commencement of chemotherapy ---- and just like a robot, I present myself and say "do what you have to do". However, there was one time that I had a meltdown -- I arrived for my appointment for the port placement. I thought it was a minor procedure like an IV input. My husband had an appointment with his back surgeon so I asked the receptionist how long it was going to be for my procedure. She mentioned pre-op, operating room and recovery. At this point, I was so sick of being poked and prodded -- I just stood in the middle of waiting room looking at my husband and cried. The nurse was so kind and I settled down. When the surgeon found out that I had not stopped my aspirin for the full 5 days, he wanted to postpone the procedure but -- thank God -- he didn't and all went well. So, I got past each of these "hurdles" -- great progress in my battle!!! The heroes in my cancer world include my infusion nurses who make chemo bearable and as I move forward I find myself stronger and more positive. I wonder about my world when I complete chemo and radiation. Will it ever feel normal again? Will I live in fear of the cancer returning? Will I learn to live each day to the fullest and not worry? Will the dimension where I now reside fade back into the real world where my loved ones are? It is through the power of prayer that I remain positive that the Good Lord will bring me through this storm to sunny days ahead and I pray that I have the wisdom to appreciate those days and enjoy whatever life I have left.

    There was a question posted on the Question Page of this site:
    "Does anyone else feel abandoned by their pre-cancer friends?"
    I have thought about this question a lot. I think that cancer changes our perception. The people you thought might be there more often are not while the people whom you least expect are. For example, when I received 2 flower deliveries -- before I opened the cards, different names were going through my head -- however the flowers were from the last people I would have ever guessed and it was such a nice surprise. I was diagnosed in November and I am still receiving cards every day -- some of the same people send cards every so often to let me know they are still thinking about me. It is so comforting to get these cards. Once, I got one card with a name that I did not recognize - I found out later that it was a lady from church. It is the same with the food that comes into the house -- unexpected sources and always appreciated. The other day I opened my door to a very special lady (the mother of my grandson's girlfriend) who had made me the most delicious cookies. However, if I let my mind wander, I could wonder why I may have not heard from some certain people -- but I have to remember that people are busy with their own trials and tribulations - and that some people have a very difficult time dealing with what to say to a friend with cancer. In the past, when I hear people comment how much it hurt them that a certain person did not show up for funeral calling hours for a loved one, I always remind them not to dwell on who did not show up but to appreciate that person whom you did not expect to be there but did show up. And, I think that may apply here. We should not dwell on those who are not able to be there for us --and we should take great comfort and joy in those who are able to be there and spoil us. And we should never judge because we don't know the reasons and most likely they will return to us in the future.

    Sorry to be so lengthy in my post but I wanted to share my Taxol experience, my thoughts on having cancer and my thoughts on the question.

    3 Comments
    • justbreathe's Avatar
      justbreathe

      Hi Jenny..congradulations! Those first 15 min. can be "a deer in head light" moments! But you are past that now, yea. I keep praying that God will give you the strength to keep pushing forward.
      I hope you are finding comfort with your Cappelleez headwear. You look great in them! Big hugs to you and Kim.

      almost 9 years ago
    • sofarsogood's Avatar
      sofarsogood

      N, you are a true survivor. You are confronting the difficult issues with courage and grace. It takes a lot of courage to make and allow yourself be vulnerable. You still have issues ahead, and you have identified them.

      Regarding friends, I think it is important to forgive them. Cancer is frightening, and some people are not ready and not able to deal with it. I too came home from surgery to find a beautiful bouquet, and I felt such joy thinking they were from my brother ( who didn't even send me a card), but the flowers were from someone at church who I barely knew. It turns out that my brother was so overcome, he couldn't act at the time. He called me from the airport crying to tell me he loved me. We are now closer than ever.

      Such a blessing. Without the cancer, I could have gone through life without knowing how others cared for me. Friends who did not react in a supportive way, are still my friends. Their reaction was not personal to me, but rather their own issues. I had plenty of support without them, meaning you will get very meaningful support from people you didn't even know, like the nurses.

      You will feel good again, but it may take longer than you think. Be patient with yourself and the process. To my surprise, I am still gaining in strength, stamina and focus a year later. I'll never forget the morning I woke up, and I felt good. I cried because I thought I would never feel that again, and I'd forgotten what it was like. I'll never take it for granted again.

      You are doing so well. You are not the same person who received the phone call telling you you had cancer. You have grown mentally and spiritually, and you will be able to help others along this journey. You have the right to grieve your loss of your sense of invulnerability, and it is a sign of growth, not weakness, to mourn for your lost self and life.
      Bless you, Jenny Miller.

      almost 9 years ago
    • pakb56's Avatar
      pakb56

      Jenny, your post was almost poetic. It was beautiful. Thanks for sharing your thoughts.

      almost 9 years ago
  • JennyMiller's Avatar

    JennyMiller posted an update

    I had my 4th Chemo Session yesterday (2/16). It is the last of the A & C and the end of the Neulesta Shots which was given the day after Chemo. The next 4 sessions are Taxol which is supposed to be a little kinder to me. Side effects may included joint pain and tingling in hands and feet. Any allergic reaction would be immediate in the Infusion Room. I am happy that I am half-way through and done with the A & C. Of course, I still have to deal with the effects of #4 which will hit Monday or Tuesday and last until about Thursday or Friday. They said the main effect this time will probably be tiredness as that one accumulates. In the past, I have not had the nausea or the bone pain (thanks to Claritin) but did have to deal with bowel problems, throat muscle pain, mouth sores, etc. Not really too bad.
    Anyway, the trip to Syracuse went well -- once again, excellent weather -- someone is really watching over us. I was a little more talkative on this trip and no tears!!!
    Since my husband Ed had a follow-up appointment for his broken back, he dropped me off at the front door of the hospital. It was the first time that I entered that territory alone. An Ambassador asked me if I wanted a wheel chair ride to the ROC (Regional Oncology Center). I said "No Thank You -- I can just do fine on my own". However, I do have a poor sense of direction and since the Center is under construction, you have to find the right elevators down a long hall then to the left which take you to the basement level --- another long hall -- then a tunnel with a turn to another elevator that takes you back to main floor. To my amazement, I did not get lost. Whenever I walk that tunnel I feel like the prisoner who is taking his final walk to the Execution Chamber and that is the farthest thing from the truth --- the Center is a "Life" Chamber and as soon as I walk in the door, I feel so cared for. After I was checked in, the Port Nurse accessed my port (ouch) -- she was concerned because my port incision was a little red and told me to have my Oncologist look at it. She was okay with it but found a stitch up farther where the tube goes over my collarbone so she removed that (ouch). My blood count was good so I was cleared for Chemo. The Infusion Nurses are wonderful -- they are my "cancer world family". I had Lynne this time -- and my first session nurse (Jackie) came over and told Lynne how lucky she was to get me -- and the nurse who did my 2nd and 3rd sessions stopped and sat down for a visit -- and the Oncologist's Nurse Practitioner (Shari) came in to just visit -- they are so caring and loving which is a great support in my battle -- and, of course, I eat it right up. I was served a little snack and beverage -- and when I got chilly, I was covered with a "warmed-up" blanket.
    My husband Ed came in at half-way. His back is healing well and only has about 2 weeks of Therapy left. After my session, we stopped for a nice lunch on the way home. It is always so nice to get home after chemo. I am in the toxic mode for 48 hours -- lots of flushing and hand washing --- the post chemo pill regimen for 3 days -- then the side effects kick in --- then the "low blood count days" -- it is becoming routine
    now. My last chemo will be April 12 -- then 6 weeks of radiation (5 days per week) -- then the port will come out!! It should be perfect timing for our planned vacation at the end of June-- a cottage at Old Orchard Beach in Maine and then on to a Cabin in Lake George, NY where we will meet up with family. The love, prayers and support of family and friends keeps me strong and positive --- and looking forward to the light at the end of the tunnel (a lighthouse in Maine!!!!)

    3 Comments
    • Staci1219's Avatar
      Staci1219

      Jenny, I love reading your post. I am so glad and you are cleared for chemo. Just remember, you have a family here that is also praying for you also and if you need anything you can click on the exchange email link and send me an email. I will be praying for you too.

      Staci

      almost 9 years ago
    • DaveWaz's Avatar
      DaveWaz

      We are behind you every step of the way.

      almost 9 years ago
    • pakb56's Avatar
      pakb56

      Every day is an adventure isn't it. Kudo's for keeping your sense of direction! That vacation sounds wonderful.

      I am round 1 carbo/taxol post treatmentment day 2. Yesterday I started have twinges, sharp like pains with increasing joint type pain today. However, once I got up and started moving, it seems to have eased up a little.

      You mentioned Claritin and I read something about that before? What is that about?

      Take care, be well.
      Pat

      almost 9 years ago