Choices

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  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member

    'So glad to hear you're doing ok this week! Enjoy your Thanksgiving. I'm grateful you're here.


    :)

  • claoh
    claoh Member Posts: 180 Member

    Thank you life in bloom. Hope you enjoy your Thanksgiving also.

  • claoh
    claoh Member Posts: 180 Member

    Hang in there Marla!!! You knew this could be tough, but you can get through this. You have the best chance of any of us being here this time next year and beyond!!

    From where can you draw your strength? One step at a time.

    Love ya and hope this time of feeling well builds your endurance.

  • claoh
    claoh Member Posts: 180 Member

    So quiet on our board. Hope you did ok this Thanksgiving day. We ate at our community club house with three other couples. My son and his girlfriend were supposed to come yesterday and spend a couple days with us but they ended up with head colds and stayed away. My husband just got over covid, and they don't test, so we were not ready to take the chance of going down that road again.

    My mother in law was also supposed to be in Florida for the next couple of weeks and had to cancel because of health issues too.

    So it's been quieter this week than expected.

    As far as my health, the pain is increasing a bit but still the same for the tumor - no leakage/breakage at this time and praying that continues. My sons are planning to visit mid December and over Christmas and am looking forward to that. Bought tickets for the Gaylord Ice show to share with both families. I'm not sure whether I should partake or not. The temperature is 9 degrees through the display. We do wear heavy freezer coats, but I need to ask whether that is a smart, safe choice for me or not.

    Miss you both and surprised how quickly we all fell on harder times.

  • Sadiej
    Sadiej Member Posts: 147 Member

    Morning ladies

    I hope your Thanksgiving was a good one. After being admitted to the hospital I finally came home late Tuesday. I was dealing with covid and a concussion and pneumonia which made my hospital stay pretty long. They want me to start back up on chemo next Monday but I'm going to see if we can't just put the brakes on this for a bit. I sleep a lot and need to recoup after everything I've been through. I am also having bleeding issues in both my urine and in my uterus I need to chase all that down also. It's a little too much for me right now so I hope when I call them they understand and will back off all these appointments they have for me including my pet scans and bring MRIS that I am supposed to have in the next two weeks. Our Thanksgiving consisted of TV dinners which was fine by me as my husband is also recouping from covid and we just don't seem to have enough gumption to actually make a dinner. We buy extra TV dinners to make it easier for us over the next week or two. I am taking a bunch of different meds to help with the breathing but I do feel myself starting to come out the other side of it. Nothing like a nice warm blanket to curl up into to get me through my days. I'm hoping to get enough energy to get a shower today as my last week has been mostly sink baths. I imagine if I pull it off I'll be going for another big long nap when I'm done but I think I will feel better also. So sorry to hear that you two are going through everything you're going through. I just don't personally feel like I'm ready to go through any more of this right now. Way too many back-to-back appointments. I just need a break.

    Hugs you two

  • marlakeeth
    marlakeeth Member Posts: 113 Member

    Good morning ladies!

    Seems like every one of us had a quiet Thanksgiving this year. I had my new Taxol infusion on the Wednesday before Thanksgiving and seem to be doing okay for now—just fatigued and a bit shaky. Taxol infusion will be once a week for the next 8 weeks. The good exciting news is that yesterday I became a great-grandmother! 7 lbs 4 oz. baby girl. Her name is Lively, born in Texas so I won't be holding her for a while yet.

    Sadie, you have been through so much lately but still have the ability to write so well. I know it takes a lot of effort to even write on the computer. Hang in there and I agree that you should rest and back off for a few days.

    That is all for now.

    Thanksgiving joke, What do sweet potatoes wear to bed?

    Their yammies....

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member

    Congratulations on the birth of your great granddaughter Riley, Marla.

    Sadie, my goodness -- I'm praying you'll have your needed respite and some relief from the multi-ailments you're enduring. So sorry you're going through this!

  • claoh
    claoh Member Posts: 180 Member

    Congratulations on little Lively!! How many grandchildren is that for you?


    Thank you for yammy joke Marla!!! : )


    Have appointment to tell my 90 year old friend about my cancer in 2 hours. Her son is visiting and will be there to comfort her until next Tuesday.

  • claoh
    claoh Member Posts: 180 Member

    Missed this was a great grand daughter first reading. Awesome!!

  • marlakeeth
    marlakeeth Member Posts: 113 Member

    Grandchildren 9, Greatgrandchild 1

  • claoh
    claoh Member Posts: 180 Member

    Good morning. Was thinking upon waking up today....... our posts are getting further and further apart and I don't want it to end without our sharing some reflection on our original goals/thoughts/choices. We each started at a different point with our breast cancers, and had different goals. Is there anything you would have changed along the way. What would you like to share with future readers who come along these posts?

    To start, I would not have changed my decision to not pursue chemo. I have given up a couple of my sport activities, but still relish each day getting out and about. One thing I would have changed was to be more active in pursuing a double mastectomy early on to avoid getting the ulcerated tumor outside my breast.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    I really hesitate to comment on this thread - I view it as somewhat holy ground. I am in awe of each of you and so thankful for your raw honesty and willingness to share your journeys with the broader breast cancer community. I grew up watching my aunts die from breast cancer and then lost my sister (ovarian cancer) and mom (breast cancer) 18 months apart. Each of their battles was about 14 months and riddled with surgeries, chemo, radiation, meds, all of it. If we had not caught my cancer so early, I'm not sure what I would have chosen. I hope to live recurrence-free for the rest of my life but, if it does come back, I know I will at least consider foregoing treatment as one of my options.

    Please keep us updated as best you can. You have many "observers" out here wishing you the very best and peace with your choices. God bless.

  • marlakeeth
    marlakeeth Member Posts: 113 Member

    Lovesprimes, please do not hesitate to comment on our posts. Everyone has a voice here.

    Tomorrow I will get my second infusion of Taxol. The fatigue is huge! No nausea, vomiting, or joint aches. However, I take Tylenol in the evening for aches in my legs. It could be from the chemo, I don't know. I have blood drawn every week before chemo and that can be a challenge since so many of the labs have closed due to staff shortages.

    I think that my tumor has gotten small and is hard to find, which is wonderful.

    Still thinking about a lumpectomy vs a mastectomy, the doctors have said the likelihood of recurrence of the TNBC is about the same either way.

    Big event today is to take a shower!

    Take care my friends

  • Sadiej
    Sadiej Member Posts: 147 Member

    Marla, congratulations on the great grandbaby! What a wonderful name to have!

    I am slowly recouping from my covid-19 pneumonia. I talked to one of the nurses today at the Cleveland Clinic who reprimanded me for not getting my temp taken daily. I'm still battling with my UTI but for now I am content to be amongst friends such as you. I was actually kind of hoping that they would have prescribed a med for me as the UTI is quite painful.

    So currently it is around 16 degrees outside which I consider obscene LOL. I keep telling my husband that I'm going to hide underneath my blankets in front of the fireplace until May. :-) Claoh I hope you're feeling better. I realize that this can be hard and I wish things could be different for everyone on this board. You asked if my goals were different. I don't have a good answer for that. There are so many things that come up when you're dealing with this. I'm sure my attitude would have been a little bit better if I hadn't come down with the covid-19 pneumonia. But here are the things that I am grateful for. I am grateful for friends such as I have here on this board. I am grateful for Christmas which in itself holds hope. I am grateful for TV dinners. :-) I am grateful for a good book or a good movie. I am grateful for my husband who has been my champion from the beginning. I am grateful for a warm hearth and a bowl full of hot soup. I am grateful for Marla's jokes. :-) I am grateful for new friends (welcome lovesprimes) who are just as important as all the rest of us.

    So perhaps for right now my chemo is not as important to me. I really don't think it has anything to do with my decision, but more in finding that peace that you spoke of often Claoh. That we may encourage each other even in these small things makes me eternally grateful.

    Love you guys

  • hr_againsttheflow
    hr_againsttheflow Member Posts: 2 Member

    Hello everyone!

    I follow this thread so I have a better understanding of what my mother may be going through. She is fighting like hell and I'm in awe of her every single day. Knowing someone I love so much is in uncontrollable pain and fighting a monster that i am unable to chase away is really tough. Being the amazing mom she is, she acts like everything's fine but I hear the pain and uncertainty in her voice.

    Thank you all for sharing your stories and your discoveries. I love reading about the friendships that have been created here on a discussion board with so much mutual understanding of the absolute suck that cancer is while reflecting on those glimpses of hope and strength along the way. You are all truly amazing!!!

  • claoh
    claoh Member Posts: 180 Member

    I am very pleased to see LovesPrimes and Hr against the flow share with us. We have often hoped others would join our conversation and share their stories. We thought there may be other's reading posts, and you have affirmed that. Please feel free to share details about what you are personally facing along with fears/accomplishments in fighting this battle with yourself or a family member.

    Sadie, Were you able to get a reprieve from all the appointments, or too hard to reschedule? Also, what is happening on the home front as far as moving? Has that been put on hold?

    Marla, hope you're doing ok after the Taxol. So glad to hear the tumor has shrunk so well.!!!

    The visit with my elderly friend went as expected and we have talked again since. It worked out perfectly that she had her family with her for a few days and she is very accepting of my decision and wants to help as much as possible, yet knows hospice will oversee all my physical needs. She went through hospice with both her daughter and husband and couldn't say enough in praise for them in those circumstances either. I will appreciate one more person in my community that I can be open with.

  • Sadiej
    Sadiej Member Posts: 147 Member

    Claoh that is great news that your friend is willing to be there by your side! I was really concerned about that for a while but it seems like everything is working out for the best concerning her.

    So I did manage to get a reprieve from my chemo which I am extremely grateful for. I think sometimes you just have to step back and breathe.

    So I have a new word to add to our vocabulary LOL. It's called a CT eurogram. I never heard of one until Cleveland called me today and wanted me to get one scheduled. It's to help with the UTI and possible kidney infection that I have going on. I didn't even think our hospital had one LOL. In the meantime, I am doing uristat to manage the rest.

    So I am SO excited to see all the new people on the board! hr_againsttheflow and lovesprimes, you are truly welcome here! You might have to come up with some good jokes though LOL. I think Marla has us all beat. Haha

    hr_againsttheflow, does your mom have a palliative care doctor? I always have said that getting a palliative care doctor is one of the most important things you can do. They do help ease the burden along the way. And Claoh has hospice also. It's absolutely amazing what they're doing for her! Meanwhile Marla has support groups which I think is really going to be helpful as we go forward.

    Okay let's talk about Christmas. :-) so when I got home from the hospital my wonderful champion and husband had set up the Christmas tree so that I would come home to a fully decorated Christmas tree. So this is my Christmas tree: the top half of the Christmas tree consists of a bunch of lights that got bundled and thrown on top. The back half is mostly bald with the exception of a few lights here and there and the entire tree has exactly three Christmas bulbs on it. I laughed so hard I cried. What a great guy to attempt to decorate a Christmas tree! I really need to get a picture of this! I'm thinking I may have to grab some popcorn and some cranberries and do a little decorating of my own on that tree, but as hubby said it is the thought that counts. I found some great recipes for Christmas cookies also and I'm hoping that I will be able to get some of those made too. Of course it doesn't count if you don't get flour over at least half of your face! :-) Perhaps I will make Sweep some Christmas cookies too. And of course throw some seed out for the birds. I think the only thing I'm missing is a food fight. ;)

    Marla, you should be coming up on a point where you decide which way you want to go with your mastectomy or lumpectomy. I am so excited for you! You're doing it girl! Gettin' her done!

    Hugs!

  • Sadiej
    Sadiej Member Posts: 147 Member

    Morning y'all

    There was a couple other subjects that I wanted to touch on yesterday. Spine compression and multiple metastases of the spine are those two subjects. When I went into the emergency department one of the things that they immediately got done was an MRI of my spine to make sure that I was not dealing with spine compression. Spine compression is dangerous for those of us that are dealing with metastatic cancers such as we have on this board. My particular danger is in the metastases of the lymphatic system. Others may be dealing with metastases of the blood vessels in the body. The symptoms of these can be anything from pain to paralysis. It can also affect bowel and bladder function. I remember when I first went over this that one of the things that I was hoping I did not get was bone metastases as this is a very painful condition. However it did not take long for them to find the metastases to my sacrum which was treated with radiation. Granted I was pretty sick when I went into the emergency department this time around but I am also grateful that this did not get away on me. What they did discover through the MRI was that I did have multiple metastases of the spine. Having problems like this can weaken your spine and cause fractures along with everything else that I already mentioned. Radiation and chemo are the two go-to treatments for this, where radiation actually helps alleviate some of the pain. Please make sure that you are aware of the symptoms as some of the symptoms do require you to go to the emergency department immediately.

    So finding out that I have multiple metastases to the spine was what I believe blew me out of the water this go round. It seemed so easy getting gamma knife surgery for my brain metastases and radiation for my sacrum. But then finding this out after everything else was a bit much for me. I enjoyed my break. Resting, sleeping, all nice and curled up in a blanket was just what the doctor ordered LOL. I am grateful that Cleveland allowed me to take this time too.

    We all need a respite once in awhile, the caregivers as much as the caretakers. It is difficult to see the ones that you love so much going through the things they have to go through. hr_againsttheflow, I do feel for you and what you're going through. Claoh too, and what your 90 year old friend is going through yet she's still there supporting and encouraging you. And of course, my champion is my husband. Donnie has a shirt that says my wife's fight is my fight. Whatever I need, he's always there to make sure that I am taking care of. It's hard for him and he busies himself around the house so that he does not have to think about it. Sometimes I think he feels guilty for wanting to do things that he would like to do. I hope not.

    Well I do believe I've reached the end of my dissertation LOL. I pray that each and every one of you be blessed and find peace today.

    Hugs

  • claoh
    claoh Member Posts: 180 Member

    Thank you Sadie for update. How is the pain in your lower back? As you are on maintenance at this point, have you considered hospice at all? A big change is that they would no longer look for recent, new activity. Sometimes I do wish I could tell if the cancer is spreading, but assume it is. Do know the pain in chest has become more intense and today felt my intestinal area was a bit different. Not painful, but just "off".

    That may just be constipation, which I've had a couple of bouts with due to the pain meds. I'm trying to stay vigilant on foods and water to help in this area. Also, bought some prunes and take a couple every time I walk by the refrigerator.

    LOVED your story on the Christmas tree!!!!! Don't really know Don well, but can imagine him tossing those strings of lights over the tree : )

    We are tackling that today.

    Take care!!!

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    I'm 4 weeks out from reconstruction surgery. It was supposed to be the 22nd but got bumped to the 29th. It's amazing how big a difference one week makes. I've been planning on the 22nd for a few months and this change up, although it allows me to NOT be in a hospital for Christmas, is kind of throwing me. And I'm quite anxious about anything happening to bump it further since we reached our out-of-pocket max on insurance even before my mastectomy in May. But it's in God's hands.

    We have a wonderful Cancer Support Community Center (I'll say CSCC going forward) here. I initially was introduced to them by requesting and going to see a Cancer Support Counselor there. The counseling is covered by insurance but they also have all these classes/lessons for cancer patients completely free. Today, my daughter and I went to Jewelry 101 where we made earrings, most of which are distributed to treatment centers throughout Central Florida for cancer patients, but we also got to take some with us. There is an artist-in-residence there that is available to help cancer patients express themselves through art in various forms. She even goes to some patients' transfusion appointments! I'm so impressed! She really helped me with an issue I've been having with my brain "getting stuck" for lack of a better way to put it.

    Anyway, before this gets too long, I'll close it out with a Christmas joke:

    What is the best holiday present?

    A broken drum--you just can't beat it!