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Rise in CA125; recurrence



  • Strongwoman
    @Hooodith  I wanted to check in with you to see how you are doing and if you received any answers from your Oncologist.  You were beyond frustrated last post.  How are you doing now?  
    Have your feelings changed about MAID and how you want to proceed or not proceed with treatment?  
    This all is so tough.  Every single one of us can have the same treatment but have different side effects or how it affects us mentally and emotionally.  It sounds like the lack of being able to do the things you enjoyed is what is getting you down.  Have you been able to figure out what in particular is bothering you the most (ie/ a project you want to get done, go somewhere, see someone)?  
    Here is a clip of a video and it is from a book entitled "Being Mortal" by Atul Gawunde.  I found the book very helpful and it has helped me to make decisions for myself as to what treatments I want or don't want, how I want to fill my days and how I want to go.  These are all difficult decisions and there is no one "fit all" approach to any of it.   I am posting the video below for you in hopes it may help.  I did a big dive into death and dying books, websites and videos when I found out I was recurrent and my timeline.  I learned a lot from all of it. I now know what I want and don't want and base my decisions around my quality of life.  It can be difficult at times and very rewarding at other times.  
    Here is hoping you find something in this video that will help you along your journey.

    I will be thinking of you daily until I hear from you.  Take care of YOU!
  • Strongwoman
    @Hobnob Thank you for sharing your post. I will be thinking of you while you are at your next chemo appt.  Hoping also that the adjustments work and you don't react as badly.  
     It is a smack in the face sometimes when we really look at ourselves and see that we are ill and do have a serious illness.  This comes to all of us at different times and we all react differently.  
      I know from other posts that the subsequent chemo treatments affects your body differently as you have built a tolerance already from within. Others seem to go through it with minimal side effects.  
    That is the million dollar question we all ponder at some point in time.  WHY ARE WE DOING THIS AND WHY ARE WE DOING THIS TO OUR BODIES.  Sometimes we reach a point and want to stop.  That is where the team and this forum helps.  To encourage one along and support your decision no matter what it is. 
    The only one that can answer that is YOU.  Your body goes through it and same with the emotional/mental aspect of it.  
      I say if Scotland is your driving force and it is important for you to get there, well then DO IT!  Build yourself a dream board about it.  Look at it every day. Give yourself a pick me up and say I am going. We all have something or someone that drives us forward.  We have to figure it out and then always keep it in our site. 
    Self reflection is both tough and rewarding at the same time.  Be proud of yourself for doing it,
    Looking forward to hearing from you soon.
    Take care of you!
  • @strongwoman
    Thanks for reaching out to me. I am quite depressed. Third chemo tomorrow and it seems to be working, so it isn’t that. Its probably the depressed phase of anticipatory grief. The losing everything and everybody at some point in the not too distant future. Yesterday the daughter of my close friend who died of cancer two years ago, came over to share her lived experience of the practical stuff we need to be working on. Very helpful, but the MAiD stuff worried me. I need more info about that. And I never had a real chance to grieve my friend’s death because five months later I was diagnosed. So some of this depression could be my missing her so much. My dreams are all about being left out of things. Last night I was denied a seat on a bus that all my friends were taking, who didn’t seem to care, and I had no way to get home. 
    I have referred myself to our clinic’s mental health nurse, but I expect she has a long wait-list. We do not have cancer teams here. I am envious when I hear about them. I have an oncologist who I have never met in person, seen once on a video link, and spoken to maybe six times on the phone, briefly. Our satellite clinic has a semi- retired GP who doesn’t appear to have ever read my file when he speaks to me on the phone. And I have my lovely Nurse Practitioner as primary caregiver, who is overwhelmed busy. Appts are now four weeks unless its an urgent matter. I so wish we had MacMillan nurses here. There seems to be no equivalent. 
    My other medical issues, plus the inevitable fatigue from the cancer and the chemo keep me from doing very much. I have tentatively started my legacy project, a chapbook of the poems I have written all my life. Just for kith and kin. Another poet friend is going to help me with it.
    I am also exploring the psilocybin therapy possibilities. There is a clinic in my area. I have emailed them but no reply so far. 
    I am so fortunate to have a loving and supportive husband, who cannot do enough for me. And a couple of good friends who are only a short drive away. And one in NYC who is my oldest friend on the planet. We met at grammar school. These people are so precious to me.
    Thank you for sending the video. I have not yet watched it. I have to be very careful when I watch stuff, as some seemingly innocuous stuff  can send me down a rabbit hole. 
    I really appreciate this forum. I wish I could be more positive, but at the moment I have to stay with my truth, and hope that it is helpful in some way, to someone.
  • Strongwoman
    @Hooodith Thank you for sharing and letting us know where you are at.  I appreciate being able to help support along your journey.
      Have you been able to speak to anyone about both the depression and anxiety you are currently feeling. If the answer is no, let me know as I believe I have some resource links that may be helpful.  
      That is both amazing and wondeful that you can and still write poetry. It is very kind and supportive of your friend to assist you with putting it together as well.
     I have not explored psycilocybin area at all. Is it supposed to help? If so how and with what. Have you chatted with anyone a out trying it?  If so, what do they recommend? If it is for you, safe to do so and your medical staff is aware then I would be curious to hear all a out it. Who would ever stop to think that this fungi would help in so many y different ways.  Perhaps it's all out there and we haven't fully grasped the enormity of what's safely available and how it may assist along with our current course of treatment.  When I told my plaintive doctor today she was supportive and positive a out it. That always feels good when they agree with you.
      I am Thankful that your hubby is so supportive as it makes it easier on us. Especially knowing we can lean on them when we  end to.
     As for the video, watch it when you are ready. Whenever that may be.  You will get there perhaps sooner rather than later or when you feel you can. All good be gentle with yourself.
      Finally and most importantly, don't apologize about how you are feeling. We can go through these patches and it is ok as long as we don't get stuck in them.  This forum is for all no matter what one may be feeling on that particular time or day.  Others may be in a different state but can help lift those of us that may be low up. No one lives and walks anyone else's life but they can sympathize and help support.  It is what the forum is for and we are friends helping friends
    Hope you find some little nuggets in here that will help you along. Hugs to you from afar.  One day at a time and plan small achievable goals or fun things. You will get through this, all your Teal Sisters are here to help along the way.
    Take care
  • @Hoodith  Never apologize for sharing how you truly feel. Not on this forum (we may not talk about it but we have all felt sad and angry and alone) and not with those people who are close to you. Pretending cheer serves nobody, especially you. Grieving is normal, being scared is normal given the immense implications of this ugly disease. Pain is real, as is the fatigue that comes with chemotherapy. 
    I’m so glad you have a supportive husband and some close friends living nearby. Consider them your support team who are there to lean on when you need help. Be gentle with yourself, as you would with a loved one if the situation were reversed.  
  • Thank you all/both for your responses. Right now I am in the chemo suite, trying to write a poem about it. It really helps to write poems. Some of mine are serious, some are funny. The challenge is to whittle the publishable numbers down. Our local poet laureate has praised twenty and encourages publishing, but I have so many more, and some written since she reviewed my ouvre a few years ago. Would you like to read some of the funny ones?
  • Or just one?
  • Strongwoman
    @Hooodith I would love to read whatever you send my way!
  • Or just one?
  • @Strongwoman Do you mean send to this particular chatroom?
  • Strongwoman
    @Hooodith maybe send one here and the rest to me personally
    Whatever you are comfortable with
  • @Strongwoman I don’t know how to send something to you personally
  • Strongwoman
    @Hooodith  This will depend on the platform you are on. On my phone, I click on round symbol that is me on the forum. Then you will see an envelope icon. Click on that and you can send a message privately. 
    On your computer at the top right there should be an envelope icon which you will follow the same instructions as above.
     Same as here you put @ then the persons name to send it to them.
      Try a test one first to see how it works
    Let me know if you need anymore help with it.
  • mjmck21
    @Hooodith your dream is so powerful to me. That is how I feel too and although I have not had dreams about loss and grief a metaphor appeared to me suddenly, once I knew there would be no cure. It's likely inspired by all the sailing have fortunately been able to do in the last year.
    I'm on a raft in water and watching all of my friends, family, coworkers, hopes, dreams, the world really, on the beach.  I can still see, wave and speak to them and often it feels like we are all together at the beach as the water is shallow and I could just get off and hop onto the beach again. But the experiences of living with terminal cancer keeps me from crossing onto the beach for all those reasons. In reality the raft is slowly drifting away. My husband is with me though, but on a different raft that is tied to mine. We are very close and its almost like we are on the same raft but not quite. At the end those ties will be cut and I will drift away leaving him as well. It's the saddest thing I have ever known. 
    I hope this is ok to share this here as well as an earlier one about an airport runway the shortens and lengthens depending on disease spread and tests but I was moved by your dream and all of everyones experiences working with anticipatory grief and felt compelled to share here as well. 
  • Strongwoman
    OMG @mjmck21 how moving are your words.  It is a very clear depiction of what I feel it feels like. The spouse/children are on an outer edge and the rest further. How eloquent and deeply moving. Your words definitely spoke to me.
    It is ABSOLUTELY ok to share here like that. It is what this forum is for.  Everyone and everything they experience. Whether that is good, bad or ugly. 
    Thank you so much for sharing that. I will be rereading that often
  • This is the poem I wrote today at chemo. I hope it doesn’t offend anyone.

    Chemo Three

    Eating cheese, I lounge in this vinyl recliner
    pinned to this space by the tubes and the IV pole.
    Bags hold the poison oozing through my veins.
    Its called Red Devil and its found in shit.
    Streptomysis Percesious.
    A sort of fungus.

    My nurse is Jennifer.
    She got a vein in one fell swoop.
    Watches me with eagle eyes
    like the bird in the photo on the wall.

    They have to robe up before touching the bags.
    Double gloved in purple, draped in blue.
    Protecting them from all my noxious nostrums.

     The volunteer offers me half a doughnut
    and I choose the one with sprinkles.
    It makes me think of birthday candles,
    those days I’m running short of in this life.

    Just half an hour to go, she says, and smiles,
    expects my happiness that I’ll soon be home.
    She doesn’t realise just how safe I feel
    in this quiet caring nurse’s zone,
    while my love gets walking time for him, alone. 

    copyright Judith Heather 2023

  • Strongwoman
    @Hooodith Thank you so much for sharing. I loved it. How do you feel about the poem?
    Is it one of your favorites or do you have another that is?
  • @Strongwoman Thank you for your reply to my post. You amaze me, how you answer all these posts, because you mentioned somewhere that you are palliative. Anyway, you have a special gift of listening to and encouraging others. 
    My chemo was today - the oncologist tweaked the dosage of Docetaxil and I will have IV hydration for 3 days and 5 days of neutrophil injections. The flurry of phone calls yesterday and today between myself and the various agencies and health clinics to arrange all this was a reminder again of how much administrative busy-ness is involved in managing your own care. I'm divorced with no children, so I do have to manage my own care. Anyways, one day at a time! We'll see how the chemo side effects play out this time and I'll be quicker to phone the clinic about mouth sores. Right now my hair is falling out (again) and my clothes, bed, shower are all so messy. But having seen it grow back again gives me hope:) 
  • @Strongwoman Thanks for loving it. I like it because it expresses some of the ambivalence I feel about chemo and my love for the nurses who are so dedicated and kind to me. Also the last line is a foreshadowing I have prepared the reader for with the birthday allusion. It is a recognition 

    of my husband’s one day always “walking alone”. 
    My favourites are the ones that make people laugh. I will post the one I wrote years ago for my friend’s wedding, but never recited it because I found out that she was an arachnophobe.but whenever I recite it on stage people love it. I will put it on Teal Thursday though.
    By the way, lastnight we read my bloodwork results from Monday, this was before the chemo. My CA 125 had gone down by a half and all the other numbers too that need to go down. I have a Catscan on October 6th and then mon onc will decide if I need the last three chemos. I don’t know what to wish for. Can anyone understand my feelings about that?
  • Strongwoman
    @Hobnob That is tough navigating this on your own.  I commend you.  Have you had the neutrophil shots before?  I have had one and it was a tough go after.  I felt so sore and achy right into my joints and felt generally unwell.  If you are receiving them daily, perhaps it will be a cumulative effect and not be so harsh as one shot dosage.  I hope that for you! issue at some points in treatment.  Losing mine actually hurt my scalp more than anything. It was shocking to see how much in one day it would come out.  A bittersweet joy when I took it all off with my son on the same day at home.  Joy in watching it grow back as well.  I imagine it would be like reliving it all again. Hope in it growing back is a good outlook.  It does come back, just slightly different than before in either texture, colour or straight vs curly.  Who knows what your new look will be! ;)
  • Strongwoman
    @Hooodith I really enjoyed your spider poem.  Thank you for sharing.  You are a good writer and I can see why they will put together in a book form.  
    As for your comment, "can anyone understand my feelings about that?".  Yes!  I understand totally.  I imagine you may be hopeful that the CT scan supports the findings from the CA 125 level and that you will not need the last 3 chemo treatments.  I feel that you may feel disappointed should you have to continue with treatment.  One might also feel different should treatments cease and be wondering how things will be monitored etc so that you do go backwards.  So much to think about and try to process including all the emotions that go with it.  
    I found out that my CA 125 levels are still slowly climbing, weight is decreasing and CT scan shows minimal growth (so much so that they don't remark on it) and watching a new area.  Telling the news to people is tough and I have to watch my wording so that hopes don't get too high.  I have simply said to most of them, "my tumour marker levels are matching the CT scan results in that there is minimal growth so kind of stable in a way. We will take it for what it is and enjoy.  It is a 'win' for now."  I don't mention anything about my weight because they will either see that or they won't and I want to give them all a good feeling.  In hopes that they won't worry so much and enjoy times we spend together with less worry.  
    Hope that helps and will be chatting soon!
  • @Strongwoman @Hooodith Just wanted to let you know that I have been receiving email notifications of your chat, as I started the thread ages ago when looking for perspective on the rise in CA125, and really appreciate the conversation and poetry. The poem about going through chemo expresses so well the ambivalence that I too have always felt. I see a direct line between the mustard gas used during WWI, soldiers dying in the trenches, and the “poison” coursing through my veins, so you are not offending me, @Hoodith , by any means!

    i got through nine treatments of Carboplatin and the ‘Red Devil’ before my disease progressed. Now I have had five treatments of paclitaxel and Avastin. I found that loosing my hair this time was actually harder on me emotionally than last time (two years ago). I suspect the reason is that, deep down, the first time around I was still expecting that I would go into remission indefinitely, despite a diagnosis of stage four complicated by pleural effusions. Now I know that I am not going into remission, that the chemo is working to hold my disease stable. I still have hope, but of a different kind.

    I also wanted to say, @Hobnob, that like you, being single after the end of a marriage makes a big difference on how I experience my disease. I have adult children who live a day’s drive away and more, so I rely on friends and one of my siblings for support. It is tough going to medical meetings and treatments alone, though. Despite these challenges, I am always amazed by our strength!

  • @PaulineJ @Strongwoman Thank you Strongwoman  for your feedback on my poem. And understanding my ambivalence about the possibility of not needing more chemo. You hit all the numbers. And I get your concerns about others’ feelings about your current state. That is one of the difficult aspects of this disease, not that we’re short of them, LOL. Caring about our loved ones and needing to be so skillful in what we say, and how we say it. I hope your results continue to show stability.
    PaulineJ I appreciate your feedback about my poem. It is so good to know that people “get it”. I too have stage 4 with pleural effusion. The latter was my signal that I was in a recurrence. I too imagined a long remission. I suppose its part of the denial we need to go on with hope in our hearts…
    Best wishes for a successful outcome of your treatment, whatever that looks like for you.
  • Strongwoman
    @PaulineJ It is some of those 'little' (what some call them) things that matter to us. For us, it is a signal of some sort, a place where we now have to face and accept what is occurring and determine what that path looks like for us.  For you, it was your hair, for others it could be something else.  These are our catalysts that propel us forward even if we aren't ready emotionally.  They are difficult and even more difficult for us to accept.  What is "just" hair for one person means so much more to someone else.  No one knows all these things/experiences like us going through it.  It is difficult. I find it heartfelt to read that you have figured out where those feelings came from.  That can be difficult to see when we are "in it".  
    HOPE--a feeling of expectation and desire for a certain thing to happen   That is the dictionary meaning of it.  Whatever that looks like for each and everyone of us is different and sometimes we get disappointed but then we set the goal post again.  It is ever evolving.  Like us.